A round-the-clock virtual centre for New Brunswick children with complex health conditions and their families to help them navigate the health care system is now up and running.
Jennifer Belyea of Hampton, who is the program coordinator for the new centre called NaviCare, is also a mom who knows the challenges first-hand.
Her first child of three, Cameron, was diagnosed at eight months old with a genetic disorder called Angelman syndrome. It causes developmental and neurological problems and usually isn't detected until parents notice problems with development when their child is between six months and a year old.
"It's often very physically and emotionally taxing, it's overwhelming and you feel alone. You find yourself frustrated and working against the health care professionals instead of working with them," says Belyea. I'm not exaggerating when I say that these parents, like I was, are desperate for information, for resources and for support."
Jennifer Belyea of Hampton is speaking about her son, Cameron, who at 8mths old was diagnosed with angelman syndrome pic.twitter.com/i1OyEqDh1y
— Laura Lyall (@LauraLyall) January 10, 2017
Belyea told us that in addition to being a first-time mom, she also became her son's health care manager.
"Because my son has such a variety of complex needs, trying to just figure out how to make everything work together and there wasn't anyone really to oversee doing that for me — so that was a role I had to take on," she says.
NaviCare was developed by Dr. Shelley Doucet of UNB Saint John and Dr. Rima Azar of Mount Allison and they are both co-directors of the centre.
"We did the needs assessment and one of the things that came through in all the interviews we were doing...from all perspectives, is the challenge around navigating the system," says Dr. Doucet. "It's not just the families that are finding it difficult, care providers even find it challenging to help families navigate the system."
The two have been working a little over two years to get the centre launched. The New Brunswick Children's Foundation donated $750,000 to launch NaviCare which is the biggest single grant the organization has ever given according to director Peter Daniels.
NaviCare is free and is offered in both English and French. You can contact NaviCare by calling 1-888-641-1977 and you can also visit their website by clicking here.