Meet Maebh Neville – Social Worker with BC Children’s

Tell us a little bit about your work and how it relates to COTS?

My role is with the dialysis population, both kids who receive dialysis at home (peritoneal) and those who come to the hospital 3-4 times per week for hemodialysis. I really do a bit of everything. I provide therapeutic and emotional support to kids and families as they adjust to a diagnosis and try to provide resources to address the various psychosocial stressors that come with being hospitalized; it’s hard on the whole family! Sometimes families just need a sounding board, sometimes they need assistance processing all of the medical information, I do my best to meet families where they’re at and be flexible to their needs.  

Canada’s healthcare system covers a lot, but it’s very expensive coming to the hospital so frequently. That’s where COTS comes in. They provide gas and transportation support as well as funding to ease the expenses of hospital stays and medical equipment that isn’t fully covered, like feeding supplies. 

How big is your caseload and how often are you seeing most of your families?

It’s actually hard to calibrate because it's such a revolving door. I’d say there’s currently about 20 PD patients, which is home dialysis, and maybe 7 on hemodialysis. But my workload and responsibilities greatly vary week to week because the health of the child and the course of their care is always changing. These kids are at increased risk of hospitalizations because of peritonitis, infections or their catheter malfunctions, and those that are being worked up for transplant have many outpatient appointments with us, so our interactions change depending on where they’re at in their care.

What is the most rewarding aspect of your work? Can you share any recent patient success stories?

It is a pleasure and privilege to witness resiliency in people, I’m always impressed by the strength of my clients and their families. I try to remind myself that it is an honor to sit with and support people at such a critical time in their life. They let me in, and I’m allowed to support them and that brings me a lot of fulfillments from the work.  

It is always encouraging to see kids reach milestones, despite their challenges.  A young man that I worked with as a teen recently started university in Toronto and is studying engineering! Recently, a patient got their dialysis catheter removed, and for the first time in many months she was able to go for a swim. Something so simple that many of us take for granted… it was amazing to see what a huge milestone that was for her. We also help coordinate Make a Wish trips; kids who require an organ transplant qualify, I’m currently working on sending one of our clients on a trip to Europe. 

It must be challenging to watch families going through the process of waiting for a transplant, what emotions come up for you, and how do you take care of yourself?  

We know that the hope of the transplant is what is keeping many families going, so we try to balance reinforcing that hope while also recognizing that life isn’t always straightforward post-transplant. It’s a hard road, and we want to be honest with our clients about that. We’re very intentional in our relationship building with families, so they trust us. It’s that trust that allows us to have these tough conversations in a compassionate way. It can be a whole bag of emotions, but I really love my work and the kids that I get to serve. In terms of support, firstly I’m very lucky to have colleagues around me that I can talk through those things. Have those reflections and check-ins can be very helpful processing the emotional side of the work. We’ve built a great team and culture, and I can leave work at work, knowing that my team has my back. I destress by going for a big cycle around Stanley Park or walking down to the beach, being outside always helps me clear my head.

Are there any local resources you can share for our COTS families?  

A colleague and I are currently running a teen support group for transplant clients. We discuss identity anxiety, peer relationships and try to create a community. We also host a parent support group once a month on Zoom. We know that illness can often be an isolating experience for families, so allowing people to kind of get together and establishing connections is meaningful.

What resources are available for supporters wanting to get involved with transplant and kidney disease advocacy?

COTS and the Kidney Foundation of Canada are the main places to start. Folks interested in volunteering may also consider the BBC Children’s Hospital Foundation. Our volunteers are a huge asset in the hospital, they provide one-on-one services to kids, but also just help out and keep kids company. COTS is instrumental in helping us fund specific requests, I know I can always call Debbie and see if COTS can help.  

Our staff also organizes a fundraising Kidney Walk each year at the end of May, which is a great time to rally people together and spread awareness.