What Are The ‘Ropes’ We Need to Learn?
If you haven’t already cruised around NavigatingHealthcare.ca, you may not have seen the information about the ‘New Work‘ of patients and care partners. Advances in medicine have meant that so many more of us are able to manage more complex health conditions than ever before. This comes with a cost – because our social and government support systems haven’t been keeping up with the changes. And that puts an extra burden (called: Treatment Burden) on us. The more we understand about this ‘New Work’, and the more prepared we are the easier it will become to manage our interaction with the healthcare system. Plus – having and using a patient binder buys you instant respect at appointments and in the ER! Check out the ‘New Work’ page to watch a short video of Dr. Victor Montori (author, Why We Revolt) outline a number of actions that make up our new work.
Getting Prepared
BYOB: Build Your Own Binder
Over the next 12 weeks we’ll be pulling together a patient binder (I also have one as a care partner). Many patients managing complex and chronic illnesses develop and use their own binders. Ours evolved step-wise in pretty much the same way we’ll build binders in the next few months. This is about more than carrying a binder around. Your patient binder is a working ‘document’, so it’s less about the binder and more about the kind of information you keep ready. We’ve had many ‘opportunities’ to use ours – when calling 911, or working with healthcare professionals whose databases don’t connect, in hospital… The reality is that the information you collect and carry with you needs to be in place BEFORE you need the information at hand. In a perfect world, our healthcare information and our narratives would be available digitally to all of our team members, but it just isn’t. We keep copies of some information in our binders on the cloud, but having the binder handy has been easier when the you-know-what hits the fan. The Good News: Building your binder is pretty straight-forward. It involves a binder, some dividers and sheets. You can use the specific sheets and templates provided here, or use some lined paper. The key is to collect the information you need about your doctors, meds, tests and appointments in one place. It’s a matter of having your information easily accessible for yourself and your family/friend care partner(s).
Collect Your Binder ‘Innards’
Here’s a list of items to collect over the next week to get you started:
- * A binder. If you can, find a 1.5″ one (or larger) to start. I started with a 1″ and it was too small and I don’t have that many sections.
- * 3-hole punched paper for notes. Over the next few weeks we’ll be constructing various pages for the binder – and you can opt to use templates. For now, having some paper will be helpful.
- * Plastic sleeve protectors for some of the pages we’ll create and to hold some of the handouts we’re prone to getting at appointments. The most important thing for now is to have things firmly in place the binder to minimize bits and pieces that can fly around or drop out.
- * Bonus points for one or two business card holder sheets for the binder – our contacts are gold.
- * Binder divider tabs – next week we’ll be creating a list of our sections. We have about 5 suggested sections, plus sections for each of our doctors. We started Tony’s binder with 8 tabs. There are lots more now.
Whether you’re super-organized or not, just having your information securely bound in one place is important. However you want to organize things and what information you need to collect is determined by your own situation… and that’s what we’ll go through in more detail next week. For now – find your binder and bits. Let me know if you have any questions or need help getting these things sorted.
