Sick children’s families shoulder huge care burden

Parents’ efforts worth $530M, but report says they need help

A first of its kind report for Ontario has put a price-tag on the staggering amount of effort families in this region undertake for their sick children.

Ottawa-area families spend more than three million hours each year monitoring symptoms, delivering medication, performing physical therapy and doing much more.

Their health-care services are worth as much as $530 million each year, according to the THRIVE report, which was released Monday.

Commissioned by the Champlain LHIN, it suggests the burden being carried by parents is one the local health system cannot afford to do without.

The Children’s Hospital of Eastern Ontario (CHEO) and the Ottawa Children’s Treatment Centre (OCTC) have a combined budget of $278 million.

The need to better support these beleaguered families is one of the report’s key findings.

“Families who provide care to their children play a role very similar to that played by long-term care homes in their provision of care to seniors,” the report concludes.

“The LHIN’s child and youth system’s success depends on familyprovided care.”

The report estimated that families in the Champlain LHIN perform 15.7 million hours of health care services annually.

If that care had to be replaced by personal support workers (PSWs), it would cost the system at least $260 million and as much as $530 million, the report found.

“We all knew that parents were providing a significant amount of direct health care to their children, but we were quite taken aback by the actual amount of hours,” said Dr. Lindy Samson, chief of staff at CHEO, and co-chair of the report’s steering committee.

“In reality, that means some parents have to stop working or stay up all night to monitor how their kids are doing,” Samson said.

Families that support children with complex diseases, such as cerebral palsy, cystic fibrosis, muscular dystrophy, diabetes, epilepsy and Down syndrome, average more than 400 hours of care a year, according to the report, which concluded that those families need more help navigating the region’s pediatric services and better access to home care for their children.

According to the report, families in the Champlain LHIN received an average of 19-per-cent fewer homecare service hours than other families in Ontario with sick children.

Those in the western part of the Champlain LHIN had the poorest access to such services.

CHEO chief executive Alex Munter said although the focus of home care has traditionally been on keeping seniors independent, more must be done to help children and youth.

“The needs of kids are different from those of frail seniors, so what we need in our region is a game plan that looks at how to tailor these services and organize them for the unique needs of children and their families.”

The report estimates that the child and youth population in the region will climb by about 20 per cent during the next two decades to 3.1 million.

The vast majority of that growth will be inside the City of Ottawa.

The health-care system has to innovate or else be willing to finance many more doctors, nurses and hospital beds, Munter said.

Home-care services for children and youth, he said, is one such innovation, since it would allow shorter, more-efficient hospital stays, while helping to preserve the crucial contribution of families.

Among the report’s other findings:

The demand for mental health and addiction services is increasing “exponentially” among children and youth;

Emergency visits were up almost 50 per cent since 2009-10;

Access to services varies widely across the Champlain LHIN;

Children and youth in the western and eastern part of the region face significant gaps in primary health care, mental health and behavioural supports;

and there is no system to co-ordinate care for children and youth in

the region, a problem exacerbated by the fact that health-care providers do not have the ability to share electronic health records.

Munter said the THRIVE report will inform the hospital’s planning process for years to come.