Neil is an Emeritus Professor at the University of Newcastle whose wife, Sue, was diagnosed with Parkinson’s disease in 1997. After Neil’s retirement they both became active in Parkinson’s Queensland Inc. (PQI), a charity dedicated to improving the lives of those living with Parkinson’s disease. He is now an Ambassador for PQI and with Sue leads the Deep Brain Stimulation Support Group of PQI.
Doctor-patient communication is fraught with constraints and limitations, often making it hard for a patient to make an informed decision about a new treatment or to be well prepared to manage their illness or disability after the treatment starts.
Does the doctor tell the patient all they need to know? Does the patient remember what information is provided? The answers to these questions, and their limitations, I have discussed in an essay, but some general safeguards include:
1. Take someone with you into the consultations(s). Two memories are better than one.
2. Record the consultation. It is hard to remember detail when you are not stressed by illness or the imminent decision to consent to a treatment. If you wish you can also share the recording with family and carers, helping them to better understand what the treatment entails and how best to manage the illness after the treatment commences.
3. Ask around. People know people who know people in your position. Follow the trail.
4. Further along those lines, join a support group or charity that specializes in your illness. There, you will be able to contact others with the same illness. They are another important and independent source of information about any treatment proposed. After all, they have HAD it.
5. Do your research before the consultation. You are likely to be asked, ”do you have any questions?” If you don’t know the questions to ask you won’t be prepared for what follows. If this is too hard for you, consider approaching an advocacy group to help you.
An informed decision about your therapy choices is likely to lead to better outcomes, one’s that you expect. Good luck!
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