Merinda Epstein - A Consumer Activist's Guide
To Mental Health In Australia
Bringing about change in Mental Health systems and Service Organisations
"To a greater or lesser extent the lessons we have learnt about consumer participation and organisational and systems change within mental health are transferable across health contexts. Even though it might be argued that the social stigma might be greater for someone labelled as having a mental illness I believe that the lived experience of powerlessness as a 'sick' person cuts across all areas of health...."
In this paper I would like to draw together some of the understandings we have gained from four projects I have been involved with during the past eight years. All of these projects have taken place within the mental health sector. All have been interested in how to bring about change within mental health systems and within service organisations. All have been based around the idea of consumer participation. And, in each case I have been ‘out’ as a consumer within the project. That is, I have made the political decision to intentionally speak and act from a position of one who has experienced services – hospital and other- as someone who has been labeled mentally ill.
To a greater or lesser extent the lessons we have learnt about consumer participation and organisational and systems change within mental health are transferable across health contexts. Even though it might be argued that the social stigma might be greater for someone labelled as having a mental illness I believe that the lived experience of powerlessness as a ‘sick’ person cuts across all areas of health. Another systemic difference between mental health and other areas of health is perhaps the fact that mental health straddles both the politics of health and the politics of disability in a way other areas of health care do not. The disability sector has a longer history of responding to the politicisation of people who live with disabilities. Finally and perhaps most graphically acute mental health treatment can be forcibly applied by law. This, I believe has the effect of exaggerating and amplifying the systems tendency towards control and organisational stasis that is however also found across all health systems.
The Four Projects
The Understanding & Involvement Project was a three year consumer evaluation of acute psychiatric hospital practice. It was funded by the Victorian Health Promotion Foundation. It took place in Victoria between 1993 – 1996.
The second project with in which I was funded by the National Mental Health Strategy as part of its Innovative Grants Program. Perhaps the most well known product of this project has been the creation of “Lemon Looning” a board game developed by consumers as an educational tool for consumers to play with staff to ‘teach’ them about consumer perspective. There is a copy of this game available here for people to look at.
Coming out of the Understanding & Involvement Project and the Lemon Tree Learning Project was a four month project funded by the North Western Health Care Network. This project developed the important idea of ‘deep dialogue between staff and consumers. I will come back to this later in the paper.
The final project that I will draw understandings from is the project I am currently involved with. It is funded under the Second National Mental Health Strategy and has been contracted out to the Mental Health Council of Australia. The Community Development Project (CDP) is an eighteen month project aimed at researching, devising curricula and implementing learning opportunities for consumers and carers who choose to participate in the mental health system.
The Understanding and Involvement Project (U&I)
During the first year of the Understanding and Involvement (U&I) project I was involved with taping and transcribing interviews with consumers, staff, managers, bureaucrats and others about their experience of acute psychiatric hospital practice. These interviews are documented in the first book from the project: “Understanding and Involvement (U & I) “A Project’s Beginnings”. In writing this paper I returned to this volume and was again inspired by the quotes about ‘the system’ not only from consumers but also by staff. From consumers there is a sophisticated understanding of the complex interweaving threads that go to make up organisational behavior and practice culture. I will briefly mention a couple of examples:
Consumers are aghast at the way that language is used to dehumanise and label them. It is interesting that although this is a major problem for consumers it does not come up as a major issue for staff. I guess this is because they are not on the receiving end of incomprensible jargon or derogatory put downs.
Here is a conversation between two consumers about “attention seeking”:
I don’t know why I took so many overdoses in those days but …Its like an ultimate protest… I didn’t want to die… I wanted to come back and have them say, “I know what happening..”
Yes, and, “I’m with you,” and, “we understand.”
But they weren’t – they never said that. They used to say, you know, like, it was attention seeking. But it was not attention seeking. It was a way of saying, “I can’t take this. Its just unbearable.” You know, but – I mean, this is like the words I hate now to this day is “attention seeking”.
That’s a very, very bad thing to say to people because it is a terrible thing.
It’s terrible, disgusting because it …?
It’s the lowest thing – it’s the worst insult a nurse can say. If a patient is in real agony or pain about something, they say, “Oh, they’re just attention seeking.” I mean that’s just unbelievable.
If you were in hospital dying of a heart attack, they don’t say, “Oh, this man’s attention seeking, “ they try and help him.
I agree, I agree..
Another consumer talks about the term, ‘case management’.
“ I hate this term, case management. “Management’ implies that you have done something wrong. ‘Case’ implies that you are no longer a person. I don’t want to be managed, and believe it or not, I am still a person! “
This problem with language continued to come up through out the project. It was such a big issue for consumers that a year later we published a bulletin where we substituted consumer preferred ways of describing what happens to people alongside the short hand and often judgmental language taken for granted by staff. Interestingly perhaps consumers pointed out to us that attention seeking could just be turned around to ‘seeking attention’ and it would no longer be so damaging and hurtful. It was also pointed out to us that Case Manager could be changed to service manager for a person because after all, that’s what they are supposed to be doing.
Consumers had some definite ideas of what constituted ‘good’ practice. Some of these were echoed by staff. A major theme for consumers was respect. In the next short abstract a consumer compares staff behaviour on ward rounds:
The ward rounds at Hospital A were completely different from the ones I experienced at Hospital B. At hospital A. they were taken by the professor and he used to talk to you. You know, he talked to you and looked at you. This was so different from at Hospital B. where everyone just seemed to talk to the room. They never made eye contact. Sometimes I used to cry when I was dragged in there because it felt like I was being brought in so that everyone could look at me. I know that this is just a little thing but at Hospital A. the professor used to always stand up and open the door for me to leave. This was such a small thing but it was important.”
What worries me about staff’s reaction to stories like this is not that they don’t understand or agree. Rather, many nod in understanding and then proceed to demonise the ‘professor’ in Hosptial B. Throughout the project we found that the demonisation of individual ‘bad staff’ or, indeed a complete profession ‘all doctors’ or ‘all nurses’ for the problems experienced and articulated by consumers. The consumer perspective question remains, “what can you (all staff/whole organisations/ whole professions/ individual staff who experience disrespectful; practice) do to:
How can an organisation make it safe for even the most junior worker to complain about disrespectful practice? It has been eye opening for me that staff have started to look towards consumes to do the complaining for them. Not infrequently I hear disgruntled voices saying things like, “at least they will take some notice of you?” However the use of consumers to do the bidding for staff is also problematic especially in a staff-pleasing culture and amongst relatively powerless consumers. We have also come to better understand the role of what Isabell Collins calls horizontal violence which can mean that individual members of staff can be threatened into line and become afraid to draw attention to disrespectful and hurtful practice towards consumers.
Consumers told stories of an unofficial culture of good practice which was present within the hospital. An example of this might be clandestine meetings between consumers and staff sometimes when the staff were off duty. Consumers often saw these as some of the most important recovery focused interactions they experienced. Others described some of this clandestine activity as the acts that made hospital bearable for them. Nonetheless the risks are also obvious. I think this area of the hidden culture is an important one and one that begs more attention from consumers and staff working together in deep dialogue.
Over and over again we heard stories from consumers about how they learnt to ‘do’ hospital. In the following quote a consumer explains how s/he is learning to ‘do’ acute psychiatric hospital:
There are lots of things around knowing the culture well enough to know when it is appropriate to ask, when someone [appears to be] busy, when is a… what’s the voice to be using, how assertive is appropriate …You’ve got to actually appear to be irrational to be legitimate, and at the same time you’ve got to appear to be rational so you don’t get dismissed as irrational or not worth listening too.
We also heard stories from consumers about how they found ways within the dominant culture to pass on ‘intelligence’ about hospital life to other consumers.
Interestingly, within the context of acute psychiatric hospital practice the sharing of intelligence (or knowing about how to look after yourself within the system) often seemed to take place around the ritual of smoking. During the project we learnt about the importance of smoking not only for communication between consumers but also in terms of communication between staff and consumers.”.
Actually the issues of the role of smoking is a good one to illustrate the subtlety of the learning that can take place. The following story comes from an incident which happened during the Understanding and Involvement Project (U&I) but which is told in the write up of the Lemon Tree Leaning Project.
Read the smoking story from Lemon Tree book.
The importance of this story in the context of this paper is not about smoking nor is it about psychiatric hospital practice per se but rather it is about definitions of professionalism which dictate that professionals must ‘know’ about things and because they ‘know’ they can second guess consumer knowledge. The nurse in this instance was a ‘good nurse’ and defined as such by both consumers and staff but she didn’t get it right. Her attempts to bring about change in the way her unit was functioning were flawed because she didn’t have all the knowledge that she needed. Importantly, the pieces she didn’t have were the pieces that even the most disempowered of her ‘patients’ could actually have taught her. Importantly too this knowledge might never have emerged if there hadn’t been other consumers working in her unit. It could be argued that this sort of community binding knowledge might have come into the realm of sacred knowledge which would only be divulged under circumstances of trust that struggle to emerge in heirachical systems of order, control and staff-pleasing.
During the three years of the Understanding and Involvement Project we struggled to get even the smallest attempts at consumer perspective change put into practice. We learnt some important lessons during this process. Perhaps one of the most striking of the things we learnt was the paradox that constrained nearly every staff member we came into contact with. Nearly everybody told us that they wanted to hear from consumers and at the same time nearly everybody found reasons why it couldn’t be done. Not only was this paradox apparent amongst staff however, consumers also lamented the fact that they weren’t being heard but found reasons not to speak.
During the final year of the project we put together tables of all the reasons both staff said it was all ‘too hard’ and consumers also said it was too hard.
It took us a long time to make these lists. They appeared overwhelming – and in a way they were. Because when all these individual trains of thought are put together you get something bigger than the sum of the individuals. You get a system. And in a system everyone may go on feeling more or less locked in and dissatisfied.
Peter Senge, in his book The Fifth Discipline, describes the system as ways of thinking which result in ‘invisible fabrics of interrelated actions (1990,p.7) He writes:
“We just find ourselves compelled to act in certain ways” (p. 44).
Chrtis Argyris calls them ‘routines’ because they ‘occur continually and independent of individual actors personalities. They include also what he calls circular or self sealing and self fulfilling thinking. Sometimes ‘how things are’ is so taken-for-granted that the system remains impervious to realising there even is a need for change. It is when the system goes into ‘denial’ that the effects of it being caught in its own compulsive routines becomes tragic if the end result is the displacement of its own highest and most desired goals, purposes, visions and mission.
The challenge for the Understanding and Involvement Project was, “could we, with the help of consumers and staff ‘uncrack’ the defensive routines which keep the system in stasis? How can we move the thinking within the organisation even by the minutest little bit to relieve staff from feeling trapped, defensive, hurt, misunderstood or not heard and relieve consumers from having what is so obvious to them denied and excused.
What we experienced in the Understanding and Involvement Project was not just a passive stalemate however. We experienced the power of the system to self protect and to do this with such tenacity that influenced our own behaviour within the project.
At times, for example, we were at a loss to know what to do next by the sense that the more staff only wanted to hear about the good, the more consumers only wanted to tell about the bad. Even the paradox of staff’s ‘good intention but no effective actions’ to get consumer feedback was itself unable to be stated by us without numerous qualifications. We found ourselves using terms like staff actions were unavoidably delayed, or would occur further down the track etc. In the final volume, Understanding and Involvement (U&I) we write:
“ we found ourselves becoming at times so contorted with the simplest descriptions of our project as to feel that even the smallest ‘ask’ was an imposition or alternatively that what we were asking per se implied a terrible insult to staff.”
We were aware that we were often joining consumers and staff in their own self-muffling. We became experts at ‘unspeak’ – referring to ‘difficult times for consumers’or ‘incidents’ and at times not even referring to ‘improvements’ to services for fear of implying anything less than best practice was already taking place.
We edited heavily: both staff (so consumers could hear) and consumers (so staff could hear). We could not easily describe consumers’ anger or derscriptions of what had happened to them for fear of triggering anxieties or incredulity. Sometimes we even edited staff so other staff would not be offended. Some staff would commence discussions with us with assertions of how we saw them in a negative light leading to affirmations to the contrary but also to us being unable to raise any questions with them.
Nontheless our problems were minor when compared to staff’s self editing. At times we felt staff in meetings, or when speaking to each other literally swallowing the words they wanted to say. We eventually came to describe what we were experiencing as ‘cork-in-the-mouth’. These included apparent embargoes on talking about :
Anything regarding their own stress, fears and emotions which is somewhat ironical for staff working in a mental health facility
Anything regarding ordinary interpersonal contact
Many staff seemed to have developed elaborate ways to avoid conversations with people – staff and consumers alike.
Anything regarding asking questions per se. Staff seemed to be required to have answers rather than to be asking questions.
Anything regarding bad practice, poor quality care and patient ‘incidents’. Staff seemed so pained by direct reference to these we learned to speak in generalities, euphemisms, approximations and abstractions.
Secondly, we found that staff literally lost their language. This was particularly apparent with staff who were supportive and involved with the project. As they heard how hurt consumers had become with the language that they had inherited from their training in the system they lost confidence in speaking. Languageless they then deferred to consumers and again the communication was diminished. It was through the important process of deep dialogue that staff were given safe places to learn to talk again, experimenting with a new kind of language.
Towards the end of the project we began to theorise what we were experiencing and again we started to understand the very system itself as being caught in a cruel paradox.. Society expects an acute mental health facility to constrain, contain, control, coerce and forcibly treat if necessary at the same time the same organisation is ostensibly about healing and recovery. For those experiencing the system from the inside (both staff and consumers) the impossibility of this social request puts extremes of pressure on everyone and throws the miscomunication that exists across health service organisations in general into the strongest possible relief.
This is best illustrated from a quote from the Understanding and Involvement Report (“A Project Concludes” p 161”
“Here then is the source of the gap – sometimes more and sometimes less – between consumers ways of seeing and staff’s ways of seeing. What may have been experienced by some consumers as ‘abuse, humiliation or neglect, emotional blackmail and atrocity’ may instead for some staff have been ‘limit setting, standard treatment, individual service planning and an incident’. What might be for some staff ‘safe seclusion, necessary medication, a sucessful treatment option in X% of casesw, unavoidable duty of care and behavioural modification’ can be for some consumers ‘being locked up, forcibly injected, electronically shocked till you lost your memory, being assaulted and treated like an animal’. What can be for some consumers ‘frightening powerlessness and terror’, can be for some staff ‘therapeutic restraint and temporary ideation’.
THE LEMON TREE LEARNING PROJECT
In the Lemon Tree Learning Project we used the metaphor of the lemon tree. We came to articulate specifically the notion that effective consumer participation was something that could only take place within an infrastructure that supported it. And we came to see our educational interventions as falling into one of three categories:
The distinction between roots, branches and leaves is drawn not in terms of content but in terms of their process and context. Most often we would be asked by services to do ‘a leaf’ – “come in and talk to us for an hour about consumer perspective”, “come to the staff meeting and tell us about the Lemon Tree Learning Project” or “come to a meeting of senior staff and help develop a consumer participation policy” On several occasions we were asked to a meeting where we found we had been invited but no local consumers from the service were in sight. Sometimes we would come to a meeting where staff, on their own or with one or two consumers were writing (trying to write) a consumer participation policy. After a while we started to mistrust leaf learning. We became cynical and started to wonder how many services would like us to come and talk so that they could tick the box that says ‘consumer participation’.
As the project developed we became convinced that the real learning needed to take place at a ‘root level’. Root learning is hard learning for organisations on several fronts:
It is not a discreet thing that can be neatly packaged, rather it is about the growth and nurturance of a new way for the organisation and staff to think about their practice. It necessitates organisations and practitioners reflecting on their practice in collaboration with consumers;
It needs a committed budget and can’t be done on the cheap. From the beginning it imperative that consumers need to be paid, and need to be paid respectfully which for some people on pensions means paid in cash. Childcare and transport need to be considered from the beginning. Root learning is deep learning – consumers employed as culture change agents need to be around a lot (and therefor paid a lot).
It will always include opportunities for deep dialogue and the promotion of this will take energy and commitment because organisations have become unused to decision free activity. Questions will need to be asked from the beginning about what will be the changes that need to be made to the way people within the organisation prioritise;
It will involve the organic attraction of more staff as trust develops. In the beginning it may start with the actions and commitment of senior managers or it may start with the commitment of a few staff who share values with consumers and who will act as culture carriers for the learning that takes place;
Learning will take place over a period of time – it will be slow;
Those staff who are committed to the process may get hurt. They are a fundamentally important resource and need to be looked after by the oganisat5ion. When consumers start to feel safe it is imperative that a respectful place is found for them to tell staff about what it was really like for them. . Denial of a voice sometimes over many years means that there is a lot of anger to come out. It will often be the committed staff who will be on the receiving end of this necessary anger. For some staff there will be deep shame if not for their own past practice then for the practice of other members of their profession. They will lose their language and may, for a time, feel disempowered. They will get things wrong and cause offense and they will have to be supported to sit with this for this is a part of the necessary reconciliation process. It will be through the ‘root’ process that culture carrying staff will be initiated but it will also be through the process that they will learn a new way of being with consumers and this will be enlightening, values strengthening and eventually restorative.
Stories will be told and sometimes retold and this is absolutely necessary for root work. Storytelling must be honoured in root process work.
Root work will always be driven by consumer perspective.
Towards the end of the Understanding and Involvement project we started to talk about the three sites which were necessary if consumer participation was to move from the tokenistic to the real. The three sites were:
DECISION MAKING SITES
When consumer participation is first muted the most common response is to invite a consumer on to a committee. Over time we developed a response to this by saying that this was necessary but not enough. A single consumer on a committee is insufficient not only because it neglects the other essential sites but also because with one lone consumer it is likely that they will be silenced especially if the committee acts in a way that disenfranchises the consumer voice.
Community Development Project
As part of the Community Development Project we are trialling a set of consumer and carer sensitive meeting protocols.
Up until now most of the work thought to be needed in terms of preparing people for meetings was to provide some basic training for consumer representatives. The development of these protocoles makes explicit the fact that the learning has to go two ways when bureucratic culture meets consumer and carer culture. Both cultures need to be respected.
There are sixteen protocoles which we are trialing with the Steering Committee for the Community Development Project. We will use them over the next year and are hoping to refine them. As you can see they range through briefing; debriefing; the use of electronic technology; providing assistance to consumers and carers to reach their constituency; the use of jargon, acronyms and the name of ‘important people; through to respect for the culture of storytelling.
CONSUMER ONLY SITES
Sometimes representative consumers come from consumer organisations who already act as consumer only opportunities to practice arguments, learn technical language, gain confidence from peers etc. As part of the Understanding and Involvement Project we developed the Consumer Consultants’ Group which went on after the conclusion of the project to become an incorporated body.
DEEP DIALOGUE SITE
From a consumer perspective deep dialogue seems always to feel the most important and be the hardest to achieve. It requires consumers and service providers to sit down together and hold enough trust to talk to each other about the deep issues that inform practice. Deep dialogue is a decision-free site. It can be conceptualised in different ways and I have been involved with projects that have trialled it with differing amount of success and resources.
During the Deep Dialogue project four staff members from a rehabilitation unit met regularly once a week with four experienced consumers. They met in sessions convened by two experienced psycho-therapists each week for eight weeks. The feedback we got from those involved, including the two convenors, was that this was a profound, practice changing experience. The issues that came up through the discussions challenged staff, consumers and the two convenors.
The challenge for organisations around deep dialogue remain: