Merinda Epstein - A Consumer Activist's Guide
To Mental Health In Australia
Consumer Perpective, Consumer Participation and Consumer Representation
A Talk to
"....health systems need the input and reflection from these three dominant perspectives if they are going to make decisions and run programmes that both do good and do no harm. With all the goodwill in the world trained health professionals (and employed administrators) must have by the very nature of their training and requirements of their employment limited perception. Even if we allow for the fact that different professional groups bring different areas of knowledge and expertise they are all perceptively influenced by the role for which they are trained and employed. A service could not run without this insight but a service that ONLY utilises insight from this perspective will be a less healthy one."
I want to start with a story.
Story of the flowers
My Uncle grows Australian native flowers on a property in Gippsland. Last month a friend of mine had just been admitted to the acute unit of a large public psychiatric hospital in Melbourne. I asked my Uncle to bring back some flowers for me to take in to her. He brought back a big bucket full. They were beautiful.
I walked into the reception area of the unit and the first person I met was a psychiatric nurse. He looked at the flowers and then turned to me saying, “This is a psychiatric unit!” “Yes! That’s what I want.” I replied. He was a bit sheepish then. “Oh! Sorry!” he said, it’s just that when I saw the flowers I assumed you had the wrong ward.”
I then had quite a wait because my friend had to be brought out from the High Dependency Unit. I sat clutching my flowers and talking to other patients. As I was sitting there I was just staring at the nursing station when I spotted the sign attached to the wall behind the counter. It simply said, SAFE TIMES 11.30am – 12.00noon and 4.30pm -5.00pm!! As a veteran of acute psychiatric wards it seemed appropriate somehow that two half hour slots were the only times that the unit staff felt confident to claim that safety could be anticipated.
Eventually I worked out what it really meant. Of course, silly me, these were the times that the safe would be unlocked and you’d be able to get your money out!
Reactions to the “Flowers” Story
However, the real interest in this story has come as I have used it as I speak to people about consumer participation.
Almost without exception the following has occurred.
When I have told this story to groups of mental health consumers there has been a spontaneous outbreak of that sort of laughter that comes only when one is intimately eau fait with the territory. It is the laughter that comes from people who have experienced being treated rudely, like children, ignored, dismissed and who know that the best way to get treated with some semblance of respect and dignity is to put your mind to learning as much as you can, as quickly as you can about the sillyness of hospital culture. There is also something in this laughter which unites people in their powerlessness. .
When telling this particular story to groups of fellow inmates (both past and present) they laugh because they know the truth of it. It’s funny because we think that whoever wrote it, which we assume was a clinician, must be totally naïve or totally stupid because they have accidentally got it right. Many of us relate to the idea that acute psychiatric hospital units are very often unsafe places to be - if not unsafe physically then at the very least, unsafe psychicly. .
However, when I have told the same story to groups that are predominantly made up of mental health professionals they usually start off by looking at me in a way that says, “so!”. They tend not to be amused primarily because they don’t ‘get it’. The reason they don’t ‘get it’ is not because they are stupid, rather it is because they are perceptively constrained by the workplace culture in which their practice is imbedded.
“Of course this sign is to tell patients when the safe is open and you can get your money out. If you didn’t put a sign up you would have to be telling patients all the time and it is far too busy in an acute unit situation to be distracted by this sort of trivial thing. It should be obvious to everyone because we all know that some patients steal things that don ‘t belong to them and peoples’ valuables need to be protected. Why, it’s totally impracticable to be going to the safe every five minutes to get something out for someone. After people have been in the unit a few days they get used to the routine. They don’t generally complain and if there is a complaint it is generally from the unreasonable ones”.
In saying this I am mocking just a little and this is just to make up for all the times the shoe has been on the other foot. Please forgive me. Sometimes clinicians do laugh, sometimes they do ‘get it’ and sometimes I explain it to them. It’s just that it’s not that same incredibly spontaneous humour which unites disempowered groups of patients.
Thirdly, when I have told this story to groups that are primarily made up of people from the community who are not immediately involved with health services they most often hear what I am saying as somewhat frightening. They sporadically laugh because of the tone I use and they sometimes ‘get it’ especially if they have had experience of the system as ‘family carers’, for example, but they have very mixed emotions and reactions for two reasons.
Firstly, they get worried that they are laughing at people who have psychiatric disabilities. This makes some of them feel very uncomfortable because of its political incorrectness. The second reaction of the more general community groups is that they immediately think that the sign must be about dangerous inmates. They don’t laugh because they think it is deadly serious if a visitor is likely to be in danger – “we must remember that this is a psychiatric unit after all”. They interpret from this that, with the signage, the unit staff are just taking due precautions to make sure that visitors will remain safe be dedicating two half hours a day where, they can presume, dangerous patients are locked up or in some other way kept under control. Sometimes general community members are confronted by this because they like to believe that patients aren’t locked up any more in these days of modern mental health services. Confronting the truth with a joke from me can be, for some people, a bit challenging. .
… and now for the point!
The point that I’m trying to make (somewhat laboriously) is that health systems need the input and reflection from these three dominant perspectives if they are going to make decisions and run programmes that both do good and do no harm. With all the goodwill in the world trained health professionals (and employed administrators) must have by the very nature of their training and requirements of their employment limited perception. Even if we allow for the fact that different professional groups bring different areas of knowledge and expertise they are all perceptively influenced by the role for which they are trained and employed. A service could not run without this insight but a service that ONLY utilises insight from this perspective will be a less healthy one.
Importantly, this story also illustrates the fact that a consumer perspective and a community perspective are not the same things. Often in pursuit of someone who can represent a community -an ethnic community, for example, health services go in search of the people in that community who have sufficient authority. This person will only very rarely speak from a consumer perspective. It is essential that the health service is organised to listen, and hear from, both these perspectives. This makes the task of those within the health service who are charged with bringing in the community a complex one. It will not be solved by collapsing categories or trying to find people who can wear as many hats as possible. I have a dear friend who is a Murray woman from Townseville who also happens to have a mental illness. She got really fed up with everyone wanting a piece of her because she could ‘do’ indigenous, woman, consumer, community leader and so on… Basically, she quit the lot. Last time I saw her she was heading off to Ireland to look up the family tree of her father who was Irish. No wonder she didn’t tell anyone about this Irish line in her ancestory.
From my point of view the most important contribution of consumer participation (as compared to professional perspective but also as compared to community perspective, carer perspective, or lay perspective) is that it brings people wearing totally new binoculars into the range of clinical and administrative decision makers. These binoculars represent a consumer perspective. This does not mean for one minute that all consumers will have the same view about things – far from it, our view is unique to each of us and influenced by our histories, class, gender, ethnicity, and experiences of everything from being teased at school to falling in to the backyard swimming pool. But what we will all have if we choose to use it is a way of looking at things from an angle of relative powerlessness; through binoculars which to a greater or lesser extent filter our experiences of ill health, chronic illness, multiple surgical intervention, mental illness and so on through a mechanism that provides a kaleidoscope mix of personal rather than professional experiences.
One of the things that happened in the late 1990s in mental health was that consumer consultants were employed in every Area Mental Health Service. This was a very progressive initiative for its time and it came directly from a project which I was lucky to be involved with. Because of my involvement I was asked to sit on selection committees for several services as they went through the process of employing Consumer Consultants. Those of us who had been involved in the original Understanding & Involvement (U&I) project had already carefully theorised and notated in published form what was likely to happen on consumer- staff selection panels and we had warned services about it in our guidelines. Nontheless it still happened. Services failed to look for people with a strong consumer perspective. On the contrary they were wary of what they called ‘politicised consumers’ and looked for surface skills rather than deep understandings. Even more disastrously many services reflexively sort from the applications that came to them people who were trained mental health professionals who also happened to have experienced mental illness.
The idea of consumer participation is fundamentally different from the concept of consumer perspective. I still think it is useful if it denotes people who primarily identify as consumers. However, there are some active players within the consumer movement who don’t use this term any more.
A good example of this confusion and some of the tensions that exist around these sorts of issues was demonstrated by the National Centre for Mental Health Research at Australian National University in Canberra. This Centre has what they call a consumer research position which is held by Kathy Griffiths, a person who has experienced depression and is a fine academic. Earlier in the year the centre organised a large forum in Canberra which was specifically about consumer participation in research.
I remember two things very vividly from this occasion. Firstly, there were only five people in the room who were speaking from the perspective of a consumer. I was the only person coming from this perspective who was scheduled to speak.. There was not even a critical mass of consumers on a day that was ostensibly about them. Can you imagine a forum on feminist research where out of forty participants only five of them were women? I doubt it!
Secondly, I was really annoyed that the conversations about consumers and mental health research almost totally engaged at the level of ‘consumer content’ and consumer participation in traditional medical research when many of us believe that one of the greatest contributions consumers can make is a critique of positivist research methods. Out of all the speakers on that day I was the only one that mentioned methodology.
This is important because I am sure other areas of health are as driven by the ascendancy of alienating research orthodoxies that battle vainly to emulate the double blind trial. As active consumers in the health field we are also lobbyists, calling for research methods that are able to hear the first person account, and which are orientated towards institutional change. In relation to this there are some professional groups such as Occupational Therapists and Social Workers, who are our potential allies. Unfortunately, we’re caught in a strange sort of catch 22 position here. Some of these professional groups are in fact caught in their own search for professional relevance and legitimacy which paradoxically pulls them further away from rather than close to well funded, serious research and practice partnerships with consumers. There are a whole lot of anomalies like this that still operate within health systems to marginalise us.
A few years ago I was asked to sit on a committee as a consumer representative. When I asked them, “who am I supposed to be representing?” they said, ‘consumers’. I said, “which consumers’ and the response was kind of like this, “you know, people with mental illness’. I said, “I can’t do that”. No one can represent people with mental illness’. The closest you are going to get is someone from the peak consumer organisation, the Victorian Mental Illness Awareness Council. To this they said, “we don’t want them. They’re too radical’. We want you because you’re reasonable!”
As flattering as this was meant to be it worried me enormously. I find it a bit scary that I am considered so reasonable. But, more importantly, the word ‘representation’ was being misused. What they were looking for in this instance was someone who would bring a solid consumer perspective and I knew I could do that. I agreed to bring a consumer perspective on the condition that everyone understood I was NOT a representative. I also suggested that a funded consultation through VMIAC was necessary. More than this, I pointed out something that they should have known; small Non-government organisations like the VMIAC have no money. Large hospitals have heaps of money relative to this. You can not ask an organisation like the VMIAC to do your consultation for you without producing the dough to make it possible. Secondly, VMIAC has a unique understanding of how to consult with people with mental illness. This requires amongst other things practiced expertise in sausage sizzle communication and the grounded knowledge to always taking at least one staff consultant who smokes when serious listening needs to be done. Again, this is consumer knowledge and we don’t share it with everybody in case it is misused.
Far too often I hear people representing health services bemoaning the fact that the people who put their hands up to be involved as consumer ‘representatives’ are always the same loud people and they are not representative. Even beyond my articulated dislike of the misuse of this word there are many problems with this sort of huffy pronouncement.
Firstly, it diminishes the contribution of those people who for whatever reason are drawn to contribute to the success of your workplace. In many projects with which I have been personally involved the driving energy is coming from consumers who are driven by some injustice that has been done to them by the health service. There is NOTHING wrong with this. It is the energy from which sustainability grows. We should be grateful that these people are prepared to come back and work towards the sorts of changes that are necessary to make sure that the same thing doesn’t happen to someone else. If you ask consumers why they choose to be involved they will often sight this as the reason. Instead of diminishing their contribution by accusing them of not being representative it is, perhaps, more profitable to work jointly towards addressing their concerns.
Secondly, the search for the least empowered ‘real’ consumers is a problematic one in my opinion because this person does not exist and it will be a perpetual excuse to not engage with anyone at all. There are similar issues around consumer participation and the excuse of confidentiality. Often consumers believe this is more likely an excuse for poor communication skills. I have issues with these sorts of excuses. I would like to refer you to Yoland Wadsworth’s book; “The Essential U&I” which is a summarised version of the original three volume report that came out of the Understanding & Involvement Project. The Essential U&I is available from VicHealth . Even though this study is now dated I think it is the best theorised of the consumer works in relation to consumer participation in health service programs and practices.
In this book Yoland presents an evidence-based and impressively theorised model of consumer participation in health services. One of the main tenets of the model is that there are an enormous variety of ways to be involved. Yes! Maybe there is a lack of representation of consumers who do not speak English or come from culturally diverse backgrounds on committees but there are another ten or even twenty ways of being involved. Sitting on a committee is but one of them. For every person who wants to be involved there is a mechanism that can be found from exit surveys, to decision making committees, to complaints procedures, to spot surveys, to community development initiatives, to story telling and so on. To limit ones’ understanding of consumer participation to people sitting on committees of various shapes and sizes and then to bemoan the fact that this only suits certain people with certain sorts of expertise and interest is silly and short-sighted.
Neill Street Story
I am going to conclude as I started with a story. This is a true story from my days as a teacher. I think it is an important one.
I was sent to teach at one of Melbourne’s most notorious schools. This school that was stupidly annexed to several towers of high rise flats and over 90% of the school population did not speak English at home. It was during the time that Federal funds were being channelled into a program we simply called – DSP (Disadvantaged Schools Program). I get the giggles about this when I think about it these days because I was not to know then that by the time I turned 50 I would end up on another DSP - also Federal money but this time standing for Disability Support Pension. When you hear this story you might better understand why this sometimes feels like poetic justice.
One of the special programs that was introduced to the school through DSP was an initiative to get families involved in the school.. This was conceptualised as a direct mechanism for reducing multigenerational poverty. We thought it was essential especially for the minority of children who came from English speaking households. The principle had particularly good skills with some of these mostly single mothers and we found people starting to get involved despite dreadful childhood experiences of schools themselves. A lot of money was pumped in to this program to enable this to happen.
I found myself feeling ambivalent about this. This was a school where we had awful literacy and numeracy problems. Part of me was questioning why the money wasn’t going in this direction. Secondly, I was really concerned about what I thought was the representativeness of this program as the people taking advantage of this open door policy were predominantly the mothers of the minority English speaking children. Thirdly, I was concerned because the school was so impoverished. Staff regularly supplied paper, pens, pencils etc. from their own resources because things were stolen and broken all the time. We literally had to employ a glazier on a permanent booking each Monday morning because of the number of windows broken each weekend. Fourthly, the open door policy was really opened door. It was made very clear to us that we must welcome parents everywhere – especially into the staff room. I found myself agreeing with this in principle but finding it difficult in practice because it meant that the community was always in my face even in the place that had traditionally been the teacher’s refuge. It was one of those situations where my critical theory and my practical capacity were at odds.
This is the story of a little boy called Adam. Carolla and I shared a class of 25 students. I think 4 spoke English at home. They ranged in age from 6 to 12 and it was what was called a multi-age grade going from Grade 1 to Grade 5. This was done quite intentionally because we were constantly getting new students with no or little English. It also meant we could have continuity with kids through different years of often disrupted attendance.
When this incident happened Adam and I were in our fourth year together. He was in Grade 5. I knew a little bit about his background and I knew it was difficult for him. His Mum had five children and a drug addiction to contend with. There were many men. I liked Adam. He had innocence and a great smile. However, despite everything I tried to do he had managed to get to Grade 5 without being able to read. I felt absolutely terrible as I was supposed to be the literacy expert in the school. I tried every approach that I knew; phonics, whole word recognition, language context approaches and nothing had worked. I was deeply worried about Adam because I knew only too well what happens to kids who pass into secondary school functionally illiterate.
One day, frustrated as hell I collapsed in a discouraged heap in the staffroom. Mainly I was feeling sorry for myself and needed someone to support my efforts no matter how unsuccessful. “What’s wrong, Ms?” she asked; Cheryl was sitting at the table, one of the ‘Mums’ who’d become a familiar face around the school. Much to the delight of her two girls, who had been struggling with their own literacy, she was now taking reading classes herself and really enjoying it. When I explained that I had totally run out of ideas to help Adam, Cheryl immediately looked up and said in this voice that was amazed at my appalling ignorance; “don’t you know Ms?” As I was totally oblivious to what I was supposed to know she went on to explain to me that Adam’s three older brothers were very influential members of a local street gang. I can’t remember the name of it. Apparently, according to Cheryl, everyone knew that part of the tight initiation rituals of this gang, was that younger youths had to prove their illiteracy as a thumbs up to all the meanings of control and power some of these kids had experienced at schools where they were failures. To be part of it you had to be able to prove your illiteracy. I had absolutely no idea about this gang and Adam’s brothers’ role in it. As Cheryl knew only too well Adam had the best incentive in the world to not learn to read.
What made me feel worse was that I had had opportunities to get to know Adam’s Mum and family better but I hadn’t done so. To be honest, I was scared and ill prepared professionally for the reality that I assumed was behind the door of that flat. If I had gone I probably would have done it badly, maybe making it worse. I would have taken my professional teacher identity with me which might have made things easier for me but which would not have helped me get any nearer the truth. It was extremely good for me to have Cheryl confront me in this way and this would never have happened if we had not had a strong policy of community participation and a principal brave enough to enforce it against some pressure from members of staff.
In consultation with the principle we devised a new program for Adam which encouraged him to express himself through art and other media. He was good at it. We made consequential decisions not to put any pressure on Adam be revealing we were now privy to this information and we purposely worked to take the pressure we had been unintentionally putting on this eleven year old child, off. We no longer expected him to learn to read.
However, that is not the point of me telling this story today. Rather it’s about how I, despite the same sort of reservations that clinicians in health settings experience, finally learnt the importance of consumer and community participation. I resisted it for a long time. It felt like yet another impost when I was already working under incredibly difficult, under-resourced conditions. The interesting thing was that apparently, well, according to Cheryl, everyone in the flats knew about Adam’s predicament. They knew it was not safe for him to learn to read but it took me longer than four years to catch on. As a professional teacher, blinkered by my own training and assumptions I was unable to see something that was ‘bloody obvious’ to those living in the flats. Despite my real concerns with the policy of inclusion it was this policy that achieved something that all my assumptions and post graduate training had failed to accomplish.