Talk for DHS forum on Acute Services
By Merinda Epstein, 27 April, 2005

"Many consumers and many clinicians make significant sacrifices to become involved in consumer driven change in the way acute units do their business. This is not generally adequately understood. It is not glamorous, nor career promoting and sometimes requires clinicians and consumers to stand up together against common practices, other clinicians and the security of cultural inertia."

I will start with a poem I wrote five years after my first extended residency in an acute unit of a public psychiatric hospital. It is simply called, The French Lady

Five years later I still remember the French lady
and the smell of pink nylon.
She would have been a fairy too when she was little,
dancing in pink on tippy-toes.
We could have clapped her then
encouraging more.
Instead, we drop our eyes
pretending she's not there, not real,
not really one of us.
Sometimes we glance sideways and
share a knowledge that only the French lady
does not know.
Or, that's what we thought.

She smokes my cigarettes
(grabbing them straight from my mouth)
and smiles.
I smile back and awkwardly place myself
between my visitor and the grabbing hand
glancing down at my own fat and bandaged wrists.
I am scared.

At night she clambers into bed. My bed.
I get up then feeling ashamed.
She's taken my purse and my money has been hidden
in strange hiding spots and down the air conditioning flue.
Someone finds my silver ring stuffed up the plumbing
in the bathroom.
The French lady smiles.
I smile back thinking I know her better now.

It takes four of them to protect me and my things.
They grab her and I can feel them. 
Eight hands pulling at me -
holding me down now and my nightie is ripped off my shoulders
as I keep struggling for a while...
and then...
- undignified, naked, defeated I find myself lying 
bewildered on the hospital floor.

They take her away and I am left feeling grotesque.

© Merinda Epstein 1995

When I was asked to speak today I was told about some of the themes that the organisers were hoping to explore and the first one was about ‘continuum of care’. I must admit that I had a little chuckle to myself at this because the very first meeting with mental health professionals that I ever attended was in 1990 and we were all sitting down around a table at Royal Park Hospital. All the clinicians and administrators in the room were quite unselfconsciously using the then popular corporate slang for what is now known as ‘continuum of care’. In those days it was ‘seamless services’ – hands up those who were around in the days of the seamless service? Well, anyway, this very experienced consumer was sitting next to me and with quick wit and superb timing he lobbed back the following response:

“We all know what a seamless service is? It’s a service which seams to be one thing but it’s less than what it seams!”

I want to turn initially to something topical and this is the story Australians, the Australian media and mental health and other lobby groups have now successfully appropriated from Cornelia Rau. When I talk to consumers about this story three key points are almost always made:

1. The first of these is why have we heard from absolutely everyone else including this woman’s family, authorities and all manner of commentators and yet the only person we have not heard from is Cornelia herself. What does this say about the worth of lived experience and the consumer’s voice? We don’t even have confirmation that she has given her sister permission to speak on her behalf and without this confirmation consumers continue to have grave concerns.
   
   
2. The second point that consumers almost invariably make is; “why hasn’t there been any sort of public inquiry (in its broadest sense) into why she felt the need to ‘escape’ from an acute unit in the first place nor why she determinedly stayed on the run.
   
   
3. The third point is the general consumer astonishment at the communal sigh of relief when Cornelia was taken off and admitted to the High Dependency unit at Glenside. The assumption of ‘problem solved’ at this point is bewildering to many consumers whose experiences of acute units is anything but ‘problem solved’.

When I first got involved in consumer activity it was immediately after I met The French Lady and experienced my month long sojourn at the old Footscray Psychiatric Hospital in1990. I was motivated to get involved because I was charged with anger about some of the ways I was treated during this stay. I think that the relationship between things going wrong and the energy to organise politically needs to be properly understood. It is not that services only hear from the angry people but it is true that anger is a great motivator. It is important also that I make it clear that good things happened during that admission as well and I speak and have published accounts of these. However, the fire in my belly that was generated by the pain, humiliation, and witness of violence is central to my politics. It is this fire that has energized me to work tirelessly for fifteen years in the pursuit of the human rights and cultural acceptance of people labeled as mentally ill in our society.

This is important, not because it is my story but rather because it explains an important process. Many consumers and many clinicians make significant sacrifices to become involved in consumer driven change in the way acute units do their business. This is not generally adequately understood. It is not glamorous, nor career promoting and sometimes requires clinicians and consumers to stand up together against common practices, other clinicians and the security of cultural inertia.

This process is carefully documented in a very important piece of consumer research I was involved with which took place in Victoria in the 1990s. I want to refer briefly to this piece of work. Firstly, it is interesting methodologically winning the Caulley-Tulloch Prize for innovation in evaluation presented by the Australasian Evaluation Society in 1998. Secondly, it was centered very squarely on the acute end of service delivery. Some (but probably not enough of you) will be familiar with this project– it was called the Understanding & Involvement (U&I) project.

I strongly recommend it as an important text for all clinicians who are interested in acute mental health practice. It is through the pioneering work of this project that we got Consumer Consultants in mental health services in Victoria.

It is now available in two formats:

• The first of these is a set of three companion volumes that include an extraordinary amount of meticulously collected data about building in effective consumer participation to acute units. I find the first volume the most interesting. Here, consumers, clinicians and administrators speak to consumer researchers in their own words about their experiences of acute units. They speak about the need many consumers often feel to look after exhausted staff, experiences of staff violence, experiences of consumer violence; the strange communication patterns that very often develop in acute units; consumer understandings of staff hierarchies; consumer culture, staff culture and right down to perhaps surprising things like the important role played by cigarettes in settings which take on the characteristics of penal institutions.
  
  
• Alternatively, the one book compendium volume available from the Victorian Health Promotion Foundation is easier to get through and provides a unique insight not only into consumer perspective of acute clinical practice but even more importantly the processes that take place that predicate against clinicians routinely collecting information first hand from consumers in acute units to enhance their understanding of the consumer experience from a consumer perspective.

Some people found the Understanding & Involvement documents difficult because they concentrated on process rather than content. I want to do the same thing here today. It is sometimes less complex and easier to get speakers who will simply talk about subject matter. This can be good things and good stories or bad things and bad stories. I was asked to concentrate on good ones for this particular occasion [grin]. Actually that’s not so hard to do as I do have some really good stories that I frequently find opportunities to share with people. My instructions for what I was told I needed to do today suggested that we (consumers) need to do our bit to bolster up the flagging collective ego of acute service practice. Unfortunately, the reality is that it is sometimes the more complex process questions which are more important. For example:

1. Why do we have a day planned to talk about acute patient experience and nobody knows how many consumers (if any) will be here?
2. Why is the consumer given fifteen minutes up on the stage and yet we have no guarantee that there will be a critical mass of consumers during the discussion sessions.
3. Why is the consumer offered $20.00 payment for presenting at this forum? What is the value of consumer expertise to the sector? What is the relationship between monetary tokens and the degree to which the sector respects consumer contribution?

My questions are not designed to embarrass anyone but they are important. I could have got up and done what consumers do- tell stories of good and bad practice from a consumer perspective. I even toyed with the idea of joining with another consumer and presenting a terrific little piece of dialogue between a well known consumer writer in Britain and a nurse on an acute unit which the consumer has nominated as best practice in ordinary human contact. However, I decided instead to name my truth. There is no excuse for excluding consumers or rendering their contribution tokenistic any more. We have been pioneering consumer participation in this State for a long time now, well over a decade. Our efforts at consumer participation are sometimes embarrassingly, regarded highly by consumers interstate. We now have a responsibility to come up with the goods.

I wonder how the organizers perceived the involvement of us, consumers who are here today. Would it be best for us to:

1. form consumer only groups to generate responses which are specifically consumer perspective to make sure this voice doesn’t get drowned out; or
2. spread ourselves as thinly as possible to try and make sure there is a consumer process watcher in every small group; or
3. make sure that as many groups as possible have a critical mass of consumers.

These are all important process questions that can not be ignored in a workshop process that claims to have consumer input. I can not nor should I be expected to present this perspective on my own. To ask me to do this is to ask me to collude with a process which is symbolic rather than real.

Just before I finish I would like to quote from my shrink who is herself a refugee from public mental health services and who has the utmost respect for clinicians she left behind. I asked her, “What would you say if you were in my place tomorrow?” She said I’d say this:

“It is a tragedy that many patients go into acute psychiatric hospitals with one diagnosis and come out with two. In my experience Post Traumatic Stress Disorder is too commonly the corollary of an acute admission to a public mental health services in this State. That’s all I’d say actually.”

Let’s look collectively towards ways we can change this reality by creatively facing it TOGETHER, searching for new possibilities and finding ways to make consumers’ experience of acute services healing. This needs to be a generative and imaginative process which seriously looks for alternatives especially in the area of consumer run crisis possibilities. Maybe we’ll be able to create something so fundamentally different that it will supersede what we now know as acute services and we can at last put them to bed as a bad idea of the 20th Century.

References

• Victorian Mental Illness Awareness Council (VMIAC) Understanding & Involvement (U&I) Consumer Evaluation of Acute Psychiatric Hospital Practice – A project’s Beginnings… VMIAC , Melbourne 1994
  
  
• Victorian Mental Illness Awareness Council (VMIAC) Understanding & Involvement (U&I) Consumer Evaluation of Acute Psychiatric Hospital Practice – A project unfolds…VMIAC, Melbourne 1996
  
  
• Victorian Mental Illness Awareness Council (VMIAC) Understanding & Involvement (U&I) Consumer Evaluation of Acute Psychiatric Hospital Practice – A project concludes… VMIAC, Melbourne 1996
  
  
• Wadsworth Y. The Essential U&I.. Victorian Health Promotion Foundation, Melbourne 2001
  
  
• Hart, Linda ‘Ordinary Human Contact – Linda Hart talks to a nurse at her psychiatric hospital’ in openmind, March/April 2005, vol 132