Funder by the Department of Human Services Auspiced by Our Community

ACCESSING YOUR FILES

People differ greatly about how much they want to know about the information that is kept about them and then informs future interactions with individual clinicians and with the system.

Some consumers keep as far away from looking at their records as possible. They don't wish to put themselves through even more pain.

Some can't be bothered - "Once I'm out of there I'm out and I don't want anything to do with it" - while others take a moral stand that these records belong to the clinicians and were never meant for our eyes.

Other consumers argue that they already know from the clinicians' behaviour that terrible things have been written about them and they want to prove they are not just being paranoid. They want proof that the words they expect actually exist (often they do).

Others want to add to the file in order to correct it, and a few are looking towards taking legal action and need information from their file in order to do so.

And consumers on Community Treatment Orders and undergoing involuntary treatment are required under the Mental Health Act to be shown their personal histories before they are due to appear before the Mental Health Review Board.

There is no right and wrong approach. It's up to each person to decide whether or not they want to access information, bearing in mind that there are a lot of things we can't do with it even if we want to.


Language

The general consensus amongst mental health consumers is that much 'mental illness' fits into a particular category of 'medical problem' that also includes obesity, chronic pain and fibromyalgia - these are all 'conditions' that are seen as 'unworthy' both by clinicians and the general public.

Records that are kept about people who have been diagnosed in any of these ways are especially fraught.

Clinicians selectively choose the information they are going to record, in what form, and using what vocabulary - decisions that are unavoidably influenced by their own particular worldview and society's views about people labelled who receive these diagnoses.

Because many clinicians pride themselves on being 'scientific' and 'dispassionate', most of them are unaware of the social conditioning that plays such a big part in how they think, how they frame conversations and what they keep as records.

There is also a huge variation in recording habits and preferences. This is especially so for psychiatrists and psychologists working in private practice. Some clinicians write so much that there is a tendency for us to stop talking so we can give a rest to our therapist's tiring writing arm. Others write absolutely nothing except perhaps a word or two after we leave the room.

Those clinicians working in public services, in a role of 'case manager' or therapist, have less choice about how much they write and how. There's a largely unspoken formula that is expected, as well as forms designed to standardise these files so that everyone in the service is able to make easy sense of them.

Unfortunately, with standardisation comes the greater reproduction and perpetuation of language that many of us find offensive, wrong, blaming, unsubstantiated, typecast and sometimes cruel.

In hospital settings, many people are privy to everything that is written about us. This is the territory of the 'multidisciplinary team', comprising student doctors, residents, registrars and senior staff, all of whom have seen everything in our file. The only people who aren't in the know are us!

Often the type of language used in the notes taken about us is influenced by time constraints and convenience. Clinicians may default to language that we consider lazy, formularised with insulting short-cut language, and repetitive.

Many consumers who have had a chance to see their files, obtained through Freedom of Information legislation, comment on how the vocabulary (the actual words) and the intent (to judge, to criticise, to blame, to understand, to worry, to question, to challenge, to blame) change dramatically with changes in diagnosis. This is especially so when a primary diagnosis is changed from a 'real' mental illness to a 'personality disorder'.

There are other sets of 'illnesses' which seems to promote particularly problematic language (and implied intent) in our records. These include somatoform diagnosis, Munchausen's and related disorders, and eating disorders. There are arguments about why those of us who have attracted these sorts of diagnoses are seen to deserve such dreadful descriptions but there's a feeling that some of it might come out of system-wide helplessness. Clinicians don't know what to do so they blame us.

There are also a number of structural reasons why our records end up being filled with angst and judgment:


Getting to see your file

The Freedom of Information (FOI) Act 1982 applies to all public hospitals, community clinics, emergency departments - anything run by the Victorian Government. Information and downloadable forms are available from the Health Department's website.

The Freedom of Information Act does not apply to private hospitals or health providers. However, the Health Records Act 2001 gives individuals a legally enforceable right of access to health information about them that is contained in records held in Victoria by the private sector.

This applies to:

More information about the Health Records Act is on the Department of Human Services website.

Limitations

The Freedom of Information Act 1982 and the Health Records Act 2001 both contain clauses which give individual health service providers and institutions the right to delete parts of our file before we access it.

Access can be denied and information can be deleted if it is considered that:


Protecting ourselves when we access our files

Many of us are scared about seeing what has been written about us. Although we may gain strength from seeing the file as proof of our instincts, getting legal 'proof' that we have been discriminated against by a mental health service can be distressing.

Many people ask someone to be with them when they open their file. Sometimes people ask a clinician to go on this journey. What we read in our file can make us angry or upset. Sometimes people who have experienced similar things can help us channel these intense feelings into advocacy or activism or black humour. All of these are terrific ways of healing.

Consumer groups are also useful. It's good to remember we are not alone and, anyway, information from our files gives us great fodder for skits and taking the Mickey out of the mental health system.


Correcting inaccuracies

Unfortunately, we can't change the information in our files, even if it is inaccurate. There is no legal right to change what has been written about you.

We do, however, have the right to add to our file. This provides an opportunity for some correction of the record; however, be careful and be prepared. Sometimes, in a system where everyone is attuned to detecting pathology, it is possible that attempts to set the record 'right' will be seen as further evidence that we are 'sick', especially if we do it more than once.


Tips from the experts (consumers!)

Here is some useful information from people who have taken the plunge and studied their files:

Expect some of what you find to be unfair; but if you are so angered by something that you feel action must be taken, your only course is to write something to add to the file. Remember, you can't delete anything.

Consider making additions to the file with the utmost care, particularly if you are going to be using the service again. None of us likes being publicly criticised and there could be a reaction to your attempt to put the facts forward. People see 'the facts' differently. This is especially so in mental health. You can test this theory by looking at material written by medically trained people who nearly always imply that consumer perspective is a 'perception' and medical perspective is a 'fact'.

If you do decide to add something to your file, follow the same rules that apply to writing a letter of complaint:

Ask for both an acknowledgement from the service/clinician that your letter has arrived and a response - within a time frame that is reasonable.