My oncologist has a new nurse, and boy to I miss the previous nurse. You see, the new nurse doesn’t answer my emails in a timely fashion (they aren’t really emails, they are electronic messages through the secure myHealth system). The original nurse checked at least twice a day, such that I often had a reply within hours of sending the message. We had an understanding. I emailed my concerns and she replied the same day. There was no need to call. I only ever needed to call if the issue was urgent (e.g. I needed pain meds the same day). But now, with the new nurse, I feel like my messages are going to a void. I report a new side effect or problem, and I wait. After at least 24-hours I get a response. I can no longer expect a reply the same day (sometimes it takes 2 days – which is an eternity when you are waiting on pain meds or trying to be proactive about treating a side effect).
Today it occurred to me that I had developed a (very mild) form of learned helplessness. I had learned that reporting was not making a difference, so I stopped reporting. My behaviour as an engaged patient changed because of a behaviour change in my healthcare team.
What is important in this observation, is that when healthcare providers want patients to ‘comply’, the providers need to do their part in acknowledging that compliance. If you want me to report my side effects, you need to acknowledge them when I do report. Otherwise, I feel like I’m wasting my time and energy reporting.
Another important note here is that you don’t necessarily need to solve the problem. As a patient, when I’m having a chemo side effect, I sometimes just need a little re-assurance. I need to know that what I’m feeling is OK. It happens. It isn’t a serious complication. I just need an acknowledgement. I want you to note the side effect in my file, so that when we are discussing my care at the next appointment, you have a better picture of my experience – I am doing my part to help ensure that you have information about my experience, to help you recommend care that aligns better with my needs. It is a partnership – but that partnership only works if you acknowledge my attempts to communicate with you.