Patient Centred Care - Like a lot of things, I’m not sure what it is, but I sure know what it is when I see it.

I always like to tell a funny story…. For many years my son talked about one of his favourite doctors. He’s been his favourite health care provider because whenever we went there, the appointments were (in my son’s perspective), mercifully short. For a young boy who spent a decent amount of time at the clinic and the hospital, listening to adults ask questions and receive information, these appointments with no preamble, little information, and mostly self congratulation, were bliss.

However, from a patient centred care approach, I’m not sure I agreed. To be fair, technically, I had no fault with this doctor. His skills were, for good reason, legendary. My son was in excellent hands. But, when it came to those small touches that makes the family feel like they are, at that moment, the centre of the health care practitioner’s world? Well, not so much. The appointments, however, were definitely brief.

We recently had a new health care clinic added to our roster and our initial appointment was scheduled to last two hours – the 13 year old approached it with dread! His tolerance for medical appointments has gotten better with age but surely not that much?

This appointment was a completely different animal from anything we’d ever experienced. This was more than #HelloMyNameIs! This was #HelloWhoAreYouAndWhatDoYouNeed? From the get-go, the questions were about what were our goals for his care. And let me be clear – not just my goals, his mom, but his goals, the patient. The entire appointment was about our partnership as a team. How we could move together and facilitate a working relationship in order to effect better healthcare for my son. Wow. Let me say that again – Wow!

Living life with a rare disease, with an undiagnosed disease, has been a life of my project managing a healthcare system that I’ve been working on figuring out myself. I’ve sorted some stuff out. But I’ve missed a lot. Some opportunities have passed me by. I think I’ve done a reasonable job, but, (and this is a BIG but), I am only aware of the things I’ve missed because of other parents. What else have I missed? And how has they impacted my son’s life?

I can not tell you how relieved, unburdened I am to have this new clinic talk to me about a team approach.

Patient-centred care. I may not be able to explain it succinctly, but can I ever tell you when I see it!

ADDENDUM
A week after this appointment we went to another new specialist. Amazingly, another beautiful example of patient centred care. We see a lot of specialists, and for the most part I don't doubt their knowledge base, but we need so much more. We need partnership and lateral thinking.

After the second great experience in seven days here's what I've distilled as [some of] my needs for patient centred care.

1. Tell me who you are and describe you specialty.
2. Ask questions to listen and give me (and my child) time to speak.
3. Ask me what I need from our relationship & how we can build a plan together.
4. Tell me what you can give and what your limits are.
5. As a parent of a patient, don't just address me, address my child, your patient.
6. Tell me how we can communicate in the future.

I now realize that health care providers like this aren't the unicorns I thought they were. They need to be celebrated as the leaders they are.