What Matters to Me? Patient Experience Shared Through Peer Support

I was going through the process of getting my third COVID-19 “jab” in January. The clinic was held in a hotel event room in Squamish. After the initial “meet and greet” screenings, we queued up along a prefab hallway leading into the main room. It must have been 12-15 foot long with railings down both sides.

While we were getting our third shots, children were getting their first, and like the rest of us, had to wait quietly for 15 minutes afterwards. They were given pens and coloured sheets of paper, and told they could document their experience. Someone had come up with the concept of taping a number of these notes along the hallway railings. Brilliant, simple and effective.

Now, as the next brave young folks were waiting in the queue apprehensive about their first needle, they could read these messages of support.

“You know I was kind of scared before, but it is not really so bad. And you get a butterscotch candy after.”

I’m sure they each had been given assurances and explanations before going to get their shot but reading those notes from their peers about what the experience was really like surely had more of a calming impact than many clinical explanations.

We all may experience “primal survival” gut responses when suddenly faced with some new unknown medical issue that has just come into our lives. Sure, the medical logic is there “but what if?” usually flashes through somewhere.

---

Before watching that magical example of peer support in action at the COVID-19 clinic, I would use the vivid example of:

Imagine you just had an accident and your spine is seriously damaged. It isn’t something you saw coming and you are now experiencing the reality of facing a long stretch of rehabilitation or permanently requiring a wheelchair. Would you prefer a clinical explanation of what living in a wheelchair is like from a very capable able-bodied health care worker or from someone with lived experience?

Rick Hansen is a rock star for applying peer support as an approach. Our collectively valued and respected care providers have done such amazing jobs preventing illness and saving lives, but there is this other complementary element that can be brought into the healing and recovery process. It isn’t alternative medicine as many fields of medicine incorporate peer support already with great results.

The Pacific Open Heart Association, Cancer Connection and the Rick Hansen Foundation are fine examples. The lung care providers apply it. The stroke care providers apply it. Children apply it as a key part of growing up.

In the case of the Pacific Open Heart Association, if you have a pre-planned surgery coming up, a peer reaches out to share their similar experience a few days beforehand.

For a couple of years now, I’ve been a patient partner as a UBC School of Nursing senior mentor engaging with older adults in the community. I share the “What Matters to You?” approach during these short sessions, even before learning it had become an initiative supported by the BC Patient Safety & Quality Council. Young people are open to learning. Fields of medicine that are researching, experimenting and applying additional progressive concepts into their work are still learning.

My “personal experience journey” involved two ruptured aneurysms – both coiled, the second one had my care team flipping a coin as to the outcome I’m told – and a double clipping (2009, 2010, 2011). The “festive” bleed found me in the G.F. Strong Rehabilitation Centre. That introduced me to the power of peer support. The beauty of rehabilitation in a community setting is that you are called by your first name, you get to interact with other patients and share meals and experiences. You also go to some forms of therapy together to build relationships and support.

These adventures, through two progressive neurosurgeons, (and very capable I can personally attest to) led to a few of us visiting similar patients on a weekly basis during their stay. If they changed units, we followed. Once they were discharged there was a monthly meeting which is currently on Zoom, allowing me to attend as a founding alum. I moved to Squamish in 2015 when my five year MRI showed “nothing ticking” to be closer to my grandkids. Then as I tried to help here, my education started on this theme.

I write this in search of progressive voices. I share the strong respect and admiration, which comes from being alive today due to their expertise. That comes from patient experience. People like me simply want to return the favour and pass it on down the line. There is wisdom in our stories. There is compassion in our efforts.

To those who already incorporate these concepts, thank you! For those that don’t, ask yourself “Why?”

It really all boils down to: Are these concepts considered “assets” or “a pain in the asset”? Your call.