"....There needs to be some way that certain groups who are particularly at risk of institutionalised discrimination can have some choice about: who gets to see their records and who does not. Which parts of their records are disseminated and which parts are not."

In 1998, after twenty years of pain and instability I was forced to have my thirteenth and, thankfully, final operation on my left knee. It was an arthrodisis – a final straightening of the joint –after this I would have no movement in my left leg, but, hopefully I would also have no more pain or collapsing either.

I also happen to have a long history of psychiatric illness.

These two things are not totally separate –I would be being less than candid if I was to argue that my psychiatric illness had not influenced my progress through orthopaedic services and vice versa. (On another day, at another time, I do have interesting stories to tell about this. . . For now, however, it is enough to know that I do believe that information about the knee part of my body and information about the mind part of my body should be being exchanged and I do believe that professionals should be informed and talking across ‘body parts’. Indeed, I think it is bad medicine medicine for this information not to be linked. (I’ll just let you into a secret. When I first typed this up for you I accidentally typoed and wrote ‘madicine’ instead of ‘medicine’ –yet again a mind/body link methinks!!)

Having said this, however, I want to tell a short story .

This is a story from my personal journey.

It was two weeks before the planned arthrodesis. I was stressed and I was ambivalent about the choices I was making about my leg. My psychiatrist lived on the other side of town from where I was going to have the operation. He was concerned about me and asked a local psychiatrist to come in and see me before the operation. She did.

This was to prove a most dangerous thing.

Although the hospital did not admit psychiatric patients this woman did see patients in the attached consulting rooms. People knew she was a shrink.

As a result of her first visit the surgeon had felt obliged to postpone the operation for several days. He came into see me the following morning shaking his head, “I don’t understand these people” he said, reflecting on the psychiatric profession in general. The consequence for me was that I was stuck in an orthopedic hospital with nowhere to hide from the stigma…

I believe that the treatment I received over the next three and a half weeks during what was a most traumatic life changing surgical event was nothing short of iatraogenic. Staff wouldn’t talk to me. You could see fear in people’s eyes. I was monitored unnecessarily. I also felt unprotected from the stigma that was already inside me. I rapidly became judgmental of myself and believed what I was being told by other’s gestures,, aloofness, sarcasm, snappyness and wary eyes. My understandable stress about having a major operation was deemed to be psychiatric illness.

This was all SO different from my previous experience. The last of thirteen operations for me on my leg this was the only time (to my knowledge) where staff had access to knowledge about my psychiatric history. The difference in the way I was treated was heart-breaking –I felt dirty, bad and undeserving. Staff knowledge about my experience of mental illness gave momentum to judgement, harshness and dismissal.

Eventually this story found a happier ending. The operation itself was a success physically and I was to become extremely satisfied with the decision I made to have it. After significant therapeutic intervention (some might even call what I was experiencing Post Traumatic Stress Disorder –if you are into labels) I I was able to leave behind the horrible legacy of that admission.

The reason I wanted to start with this story is to make a very simple point:

“medical information about people is not value neutral.”

I remember believing when I was captured in that hospital bed with metal skewers going through my leg that I desperately needed to see my file. I knew (as one does know) that there would have been the word –NUTCASE- BEWARE written in CAPITAL letters and red ink across the front of it. Of course, this wasn’t true. But this is what the way I was being treated made it feel like to me.

Talking to other consumers in the mental health field this is not an isolated story. Moore (1996) asked mental health consumers to tell their story of treatment in a variety of generic and community services including mainstream health services.

Here, there are examples of people talking about being terrified of the casualty departments of large public hospitals. This was partly because they were worried that if their psych. records preceded them they would be treated with disdain or fear and their authentic physical complaints would not be taken seriously (that is—they would be dismissed as fabrications of troubled minds without sufficient exploration). Consumers tell similar stories of their experiences with GPs and point to ‘escaping their records’ as one reason why they pursue a course of action which some writers choose to document as ‘doctor shopping’.

As one consumer in Moore’s work put it:

“My biggest thing is the medical profession and hospitals. I think they need a good kick up the bum. The minute they find out you have a mental illness everything changes. Whether it be the treatment, or lack of treatment, or the way they approach you.” (p4.)

Moore notes that consumers had major issues with lack of confidentiality and the liberal availability of their health records.

“The services where consumers reported the most stigmatisation and discrimination [out of a variety of community services ranging from leisure service through police services , ambulance, DSS, financial advisors, home help, disability services etc] were those services where they had no choice about disclosing their psychiatric histories. In this regard the general health services posed the greatest difficulties… doctors, general hospitals, emergency departments – with distorted responses to mental health problems and apparent disregard for the consumers’ physical health problems.

A few years after the last of my knee operations I found myself in a position where I felt brave enough to FOI my psychiatric files. I am very glad I did it. When I’m talking to groups I sometimes say:

”You know all the awful things you thought they were saying about you? They were!”
Oh! How nice to have proof that my fear of what had been written about me was not (as ‘they’ had implied) just my paranoia.

I’ll briefly mention a few of the things I found in my files:

1.
1. A discussion about my homosexuality from a time when I was living in a heterosexual relationship—a discussion, which was having airplay (record-play) between staff but was never mentioned to me. 2.
2. An introductory description of me as a plain looking woman – as well as the usual five thousand references to me being manipulative, attention seeking, acting out, and so on. 3.
3. Several labels/diagnoses I had never been told about. What were they doing as secrets in my file? 4.
4. A private phone conversation was recorded in quotation marks in my record. Equally worrying was the fact that this had remained in my record with no apparent/obvious attempt to challenge the writer on the ethics of this.

The issue of the linkage of service records can not be viewed or understood separately from the issue of the quality of the information that is recorded (and likely to be linked) or the ethics of the process of gathering this information.

At a meta level consideration must be given to the cultural context in which information is being recorded and disseminated:

• Is there information written about people which is based primarily and perhaps totally unconsciously on class or racist or gendered assumptions. Are these records contributing towards sustaining racism and/or classism?
• Is there methodical protection of people from groups within society who are systematically discriminated against – et large and also within medical systems eg. People suffering from ‘mental illness’, people who’s physical distress has no known organic origin yet, people with chronic pain etc.

As we are talking about the meta issues involved with access to information it is important to also ask questions about micro considerations of the information and its effect on the individual:

• Is this information material that the consumer knows about? Is it something that s/he should know is recorded about them?
• Is this information material that the consumers took part in compiling?
• Is there any language used within the record documents which vilifies the consumer involved? What are the ethics around repeating and proliferating this?
• Are there safeguards about who can get hold of this information? (including medical professionals who don’t particularly need it).

In conclusion I would like to suggest that:

• Before the dissemination of information becomes even more streamlined and widespread an equivalent amount of energy and resource must be put into educating staff about the ethics of record keeping.
• This educational input needs to be promoted in tandem with any efforts to improve record linkages.
• The education of service professionals needs to be driven by (and undertaken by) consumers and others who have experienced the effects of careless or badly thought-through records and/or institutionalised and discriminatory language.
• That other mechanisms and safeguards need to be put in place to protect consumers from the adverse effects of their records being more widely available to service personnel and that this needs to be built in to all record linkage projects; and
• There needs to be some way that certain groups who are particularly at risk of institutionalised discrimination can have some choice about:
  • who gets to see their records and who does not.
  • Which parts of their records are disseminated and which parts are not.

“The services where consumers reported the most stigmatisation and discrimination [out of a variety of community services ranging from leisure services through police services , ambulance, DSS, financial advisors, home help, disability services etc] were those services where they had no choice about disclosing their psychiatric histories.

In this regard the general health services posed the greatest difficulties… doctors, general hospitals, emergency departments – with distorted responses to mental health problems and apparent disregard for the consumers’ physical health problems.

Moore H. Why Don’t You Ask?
Understanding and Improving Mental Health Consumers’ access to
Community Support Services – Consumer Interview Report;
Unpub. PhD Thesis, May 1996