Legislative Assembly for the ACT: 2015 Week 11 Hansard (Thursday, 24 September 2015) . . Page.. 3500 ..
I have some general concerns about the culture of the way we treat those caring for patients with a mental illness or disorder. I am told that some clinicians operate under an assumption that they are not able to share health information. There is, perhaps, a cultural dislike or nervousness about sharing any information even with the patient’s GP, and even when they are the nominated GP. The idea that all health information is not shared has often led to less than ideal care for those patients. In the same vein, it is a practical reality that in our city carers struggle to get the information that they need. I am told by many carers that they feel cut out of the information loop, that they end up frustrated, particularly when assisting their adult offspring to seek help for their mental illness or disorder and the family are not always able to properly be a part of the healing process or the caring team.
We have just seen a bill in this place about children which talks about people’s official entry into the care team and the way that they get information. I think there needs to be a conversation in this place about how we might improve that. The complete help that carers can be, and indeed their ability to cope, is often compromised.
It is interesting to note the difference between a parent taking their adult child to the doctor or ED with a broken leg when they are included in what the treatment process will be and what follow-up might be required with a physio or some other allied health professional. They are openly told what medication or pain relief that patient will need and when they should return to have the cast removed. In the case of a parent attending as part of a care team of a patient in that case, no questions are asked.
Contrast that scenario with a parent who takes their adult child to a psychiatrist or the ED or who sits in the waiting room when their adult child is suffering with a mental illness or disorder. We talk a lot about de-stigmatising mental illness; however, it is essentially as though there is a continuing stigma where, in particular when it comes to a mental disorder, we would not want carers, parents and so on to know what is going on with their adult children as a preference. It is a problem that needs to be addressed.
At many times parents and carers are treated as unnecessary and are kept out of the information loop even if it is not a legislative matter, even if it is just by culture that that occurs. The clinicians are focused on guarding the human rights of the patient and not being accused of having shared inappropriate information. That is a good thing, but there needs to be more room to include parents and carers in what the next stage of care might be, what medication or treatments the patient may embark on or what the road to recovery or best management might look like even if the very specific details of that person cannot be shared.
I have heard so many exasperated elderly and exhausted parents tell me how frustrated and isolated they feel as they are not able to be part of the information loop or the team that is caring for their child. One mother shared with me that her son in his late 30s suffers from paranoid schizophrenia. The son lives at home with his parents now. He has spent some time living in his own house but he is back at what he sees as home. So they are his primary carers. They support him financially and ensure he has