Doctors are trying to better understand the individual affects of mental illness on patients and how it impacts their lives.
It is difficult to explain how it feels to stand in a psychiatric ward, at the bedside of your dad, who is lying there after apparently trying to take his own life.
I remember the terrified look in his eyes as he asked; "what is wrong with me?"
Not even the doctors knew. They still don’t, really.
So I stood there clutching the salad roll I had brought him and the bottle of ginger beer - as if offers of fresh, non-hospital food could somehow alleviate his pain – and I told him the only thing I could. I told him I didn’t know. I told him it would be okay.
My heart broke for him.
It was clear he did not know why he did what he did, had not ‘chosen’ to do it and yet had woken up in a hospital ward because of actions he could barely recall.
But my dad, who I adore, admire and love, is one of many patients with mental illness that never receive a formal diagnosis. Dad was eventually put on a medication used to treat schizophrenics and bipolar patients. But he does not have schizophrenia, nor bipolar. Extensive testing has revealed nothing more solid than ‘mental illness’.
And while his symptoms might sounds similar to someone else’s, perhaps someone who does have a diagnosis, what my dad is suffering is uniquely his own. No-one with mental illness is the same.
My dad just happens to be one of the many undiagnosed.
But is it important for patients and their families to receive a solid diagnosis? If they eventually find a treatment that works, does it matter what category a doctor may be able to fit them in?
Rhoshel Lenroot, a psychiatrist and research fellow at Neuroscience Research Australia, said it was difficult to say how many mental illness patients never received a more rigid diagnosis, but said such patients were often confronted with difficulties in accessing medications or being selected for clinical trials.
"People that have mental illnesses but don’t fit into the biology associated with specific diagnosis may still be relevant to researchers, but they don’t get included in studies as researchers need to adhere to certain criteria and make sure the people they are studying are somewhat similar," Professor Lenroot said.
"I think the other good thing about receiving a diagnosis is if you do fit in to that diagnosis, there is then a body of work out there about it, research and information you can turn to, so you can gain some level knowledge about how this diagnosis is likely to affect you over your lifespan and what treatments are helpful."
Not receiving a solid diagnosis did not necessarily affect patient treatment, she said, but said it could make accessing drugs more difficult.
To get government subsidies for certain drugs, patients sometimes need to meet strict criteria to "prove" they have a condition requiring that drug.
"If you’re getting support for pharmaceutical treatment through the government, they do require a certain diagnosis for it to be covered which to some extent is understandable in that they need to be able to rationalise why they are paying for it," professor Lenroot said.
"But as a clinician I do find that difficult – those situations where I don’t want to use a diagnosis or label on a patient but I know the patient needs and would benefit from access to that treatment."
However, professor Lenroot said it was important not to assume that people with illnesses such as schizophrenia or autism necessarily had a less difficult path in understanding their condition and treatment for it.
"Our understanding of all of these disorders is still at such early stages that I don’t think you can say someone with a diagnosis has any more certainty, because there really can be so much difference between individuals who might have been diagnosed with the same disorder," she said.
"Within one clinical diagnosis, there can be a lot of variation."
She said increasingly, medicine in mental health was starting to focus less on diagnostic labels and more solidly on individuals, their goals and what they wanted their treatment to achieve. It meant patients hopefully wouldn’t be left waiting years for treatment simply because of a failure to specifically diagnose.
The Black Dog Institute is one organisation where doctors try to understand the individual affects of mental illness on patients and how it impacts their lives. Patients are assessed using an online resource called the Mood Assessment Program that helps psychiatrists tailor a treatment program to meet patients’ specific needs. Their onsite clinic is staffed by psychiatrists and psychologists that specialise in difficult diagnosis and people can be referred to the Medicare rebated service by their doctor.
"By reworking the framework for the diagnosis of mental disorders we can better give patients the best treatment rather than forcing those patients to fit into clinical domains," professor Lenroot said.
"More effective frameworks for the treatment of all mental illness patients may not happen today or tomorrow, but I’m confident we're getting there."
Support is available for anyone who may be distressed by phoning Lifeline 13 11 14; Mensline 1300 789 978; Kids Helpline 1800 551 800.
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