BC patient advocates working to improve global pediatric pain care

December 15, 2020

Lancet Child & Adolescent Health Commission logoThe Lancet Child & Adolescent Health Commission has published a new kit – Delivering transformative action in paediatric pain – to centralize the best available tools, expertise, and evidence to provide better treatment for childhood pain globally.

The Commission is based on four transformative goals for advancing pediatric pain over the next 10 years: to make pain matter, understood, visible and better. It also sets out priorities for health care providers, researchers, funders, and policy makers, and calls for cross-sector collaboration to improve the lives of children and adolescents with pain.

The Commission engaged stakeholders from around the world. Two patient partners from Squamish, BC, Zach and Isabel Jordan, played a critical role in the development and publication of this Commission. Zach is 19 years old and lives with chronic pain and a rare disease. Isabel, Zach’s mother, was subsequently diagnosed with the same rare disease and has lived with chronic pain since she was an adolescent.

Zach began his diagnosis journey when he was roughly only two years old and has since experienced many procedures without adequate pain management.

“It wasn’t recognized that there was this cumulative effect on his body and on his soul,” Isabel says. “As we know now, more and more, there’s long-lasting effects on those pain pathways for some people.”

Isabel and Zach’s family became involved in patient engagement work when Zach was seven years old. Their interest in this work led to them co-founding the Rare Disease Foundation along with other families and health care providers.

“I don’t think the system works as well as it can,” Zach says about his interest in participating on the Lancet Commission. “So, I want to try to push for reform.”

“Researchers and policy makers undoubtedly have key information and knowledge about this work, but they’re missing a critical piece without the patient perspective,” Isabel says.

Isabel hopes the Commission will reach health care providers, policy makers and funders at all levels of health care to ensure the best practices and recommendations outlined are adopted at every point of pediatric care rather than only at specialized pain clinics.

“If I think of all the times Zach’s had vaccinations, needle pokes, and biopsies, in many cases it’s been through public health, general practice medicine or his school,” Isabel says. “The siloed knowledge that pain clinics and pediatric pain researchers have, we need to break out of that. So the overarching goal of the Commission is to translate this knowledge outside of those boundaries and I think that’s really important.”

Isabel also hopes that this work will help to increase the emphasis on pain management in pediatric health care. The goal that stands out to her most from the Commission is to “make pain matter.”

“We need systems in place where there’s a deep understanding that how we treat children early on doesn’t disappear,” she says. “If we dismiss them, if we choose to ignore their pain, that doesn’t just go away. It has implications.”

“If you make pain matter to the professionals who are interacting with kids through every procedure, or listen to kids when they say, ‘I have pain’ rather than dismiss it, then you can put a stop to that pain before it becomes chronic and a lifetime issue,” she says. “You might not be able to make the pain go away but you can recognize its importance and make it go away as much as you can. And you can tell the kid that it’s important to you.”

You can access the Commission on Delivering transformative action in pediatric pain for free here.