I take an active role in ensuring that collaboration occurs. I never rely on the providers to do it on their own. I know they do not have the time nor the bandwidth to provide an optimal level of collaboration. Therefore, I serve as my own case manager to ensure that information is relayed between the various specialists as needed.

Being your own case manager requires a structured approach. I go to every appointment with an agenda, one for myself and one for the provider. The agenda includes updates on overall health and any relevant labs and reports from other providers. I transfer the labs and reports in the portals and take hard copies to the appointments. I remain focused on the issue(s) I am there to see the specialist about but insist on holistic care from all providers.

Assertive patients receive higher quality care. Passive patients do not. The best way to approach all providers is with mutual respect and positive engagement in shared decision making. Most providers welcome this approach. I replace any providers who do not.

This is what is in the agenda.

Treatment goals:
Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach
Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment
Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

Wishing you success moving forward.

Love the case manager approach! I’ve been ny husbands case manager since 2017, however the docs don’t take me serious and my husband likes to make jokes about his MDS/MPN overlap with jak2 and ASXL1 mutation, along with lung cancer and an ostomy bag
I get frustrated after every appointment because he does this everytime! For the past few months he has had kits of pain in his chest, back, shoulders and ribs. Anyone else suffer from this

Steve, thank you so much for your answer. This is what I have needed, a case manager approach.

Thank you so much!! This is so helpful!

I give out names and numbers and hope for the best...