CCDP: How To Prepare For Your Intake Call

You've been on the waitlist for the Complex Chronic Diseases Program (CCDP) at BC Women's Hospital for what feels like forever, you've finally been accepted, and your intake phone call with the CCDP Nurse has now been scheduled. Now what? What should you be doing to prepare for your intake call?

My own intake call happened quite a few years ago now, back in 2016, so I'm very foggy on the details of that call but based on my own experience and how I prepared myself for this call (I dug out my notebook from 2016 to check my preparation notes) I can provide you with some suggestions for how you can best utilize this appointment.

1. Knowledge is Power: understand what the CCDP claims to provide to better help you advocate for the support you need

By this, I mean that it's important to know what services or promises a program or organization provides so that you have a better idea of how they can help you and what you are entitled to ask for in terms of support.

According to the CCDP's Orientation Video, the CCDP is designed to "deliver a comprehensive health care program" that includes a complete medical assessment, any additional investigations you might need in order to determine what is going on with your health, and assessments to help you get diagnosed if that's what's needed.

Knowing this immediately empowers you - I would encourage you to assert that you need to be seen by one of the program's physicians in order to receive this comprehensive medical assessment (in the case that they're determining whether you're a fit for the program or not). This is especially important if your own GP / primary health care provider is unknowledgeable in these kinds of chronic diseases (ie. fibromyalgia, myalgic encephalomyelitis, lyme disease, central sensitivity syndromes) and has acted as a barrier to you being referred to other specialists for further investigation.

In the video, the CCDP also states: "Our role is to help support you as you come through the program. We offer ways to help you access the services while respecting your health goals and your energy levels as they fluctuate". I would use this piece of information as an indication that you should know what your health goals are and also to empower yourself with the knowledge that it's your right to set the pace for your appointments according to how you feel. Don't let anyone tell you otherwise and if they do, remind them that pacing and respecting your limits is in their own program mandate!

2. Have written notes in front of you (either on paper or on the computer)

Do not rely on your memory, especially if you have brain fog. Have as detailed notes as possible to help you clearly communicate and answer questions. I always think it's better to be over-prepared than under. Your notes should include:

• Your history of illness - when did you first start getting sick, what is the progression of your illness, what testing has been done, what diagnoses have you received and when, etc
• Your symptom history - what symptoms do you have now and in the past few months, how frequent or severe are they, how do they impact your function, etc
• If you already know about functional capacity and energy envelopes, explain what your current level is - how many useable hours do you have in a day where you can do things without triggering symptoms? I had very comprehensive notes about all the areas of my life that were being impacted by Central Sensitivity Syndromes so that I could clearly explain with specificity what was happening. For instance: notes about what brushing my teeth and showering were like now (ie. capable of showering only once per week or once every 2 weeks and needing to sit on a stool), light sensitivity, mobility issues (furthest distance I could walk, what symptoms were triggered by doing stairs), inability to drive, how my relationships were falling apart, severity of brain fog and the impacts on comprehension, weight fluctuations, mental health impacts, inability to work, etc
• What activities were you capable of doing before getting sick and how has your life changed since getting sick - what do you struggle with, what activities can you no longer do with ease or at all (ie. working, socializing, cooking, showering, driving etc)
• The medications and supplements you're currently taking and dosages (and maybe past medications you've tried for these particular conditions)

3. Write down your program goals

What do you want to get out of your time at the CCDP? What do you need help with? What answers are you looking for?

Keep in mind that the CCDP will not have a cure for your chronic disease. This is more about determining what you are ill with (getting a diagnosis), getting assistance with symptom management, and learning how to cope with and manage life with chronic illness.

I didn't understand what the CCDP was for when I first got accepted (there wasn't much available information at that point) so some of the goals I'd written down were: pain management and learning techniques for how to minimize it, ways to get off being on so many different medications if possible, symptom management, and getting assistance from the social worker with applying for financial aid (full disclosure: I've never been successful and haven't received any financial aid from the government). I'd already been diagnosed by Dr. Ric Arseneau before getting into the CCDP so that wasn't necessary. But I did end up exhibiting further issues once I was in the CCDP which resulted in receiving additional diagnoses.

4. Write down any questions you have

If there is anything you don't understand about the CCDP, what the process looks like, what help you can receive from the program, etc - write them down and ask them!

I hope this helps you make the most of your intake call. This is your time to highlight how challenging your chronic diseases have made life for you and emphasize how much help you need. I wish you all the best and if you have any questions or want further guidance, please reach out to me. Leave me a comment or visit my contact page for my email!

Photo credit: Sarah Gualtieri on Unsplash