For the first five years of his life, Matthew Paravan was a typical little boy – happy, active and social – but that all started to change during a family vacation in 2012.
“It was a very frightening day,” his mother, Stephanie Paravan, told Global News.
The Ottawa family had gone camping outside the city when Matthew had a seizure and lost consciousness. Within a few months, his health started to deteriorate. Tests revealed lesions on his brain. That’s when the Paravan family’s medical journey began.
Now 10-year-old Matthew experiences multiple seizures on a daily basis.
“On a good day, we might see maybe 30 to 50 seizures. On bad days, they’re almost constant … so we’re talking more than 200,” said Paravan.
Starting in February 2013, Matthew needed diagnostic assessment and treatment from the three different specialized care hospitals – the Children’s Hospital of Eastern Ontario in Ottawa (CHEO) the Hospital for Sick Children in Toronto (SickKids), and Holland Bloorview Kids Rehabilitation Hospital also in Toronto.
Matthew and his family travelled back and forth between centres.
Paravan said she soon noticed a gap in the system when it came to sharing Matthew’s medical information.
“It was very difficult being involved with multiple centres because I felt as a parent that we had to be responsible for a lot of the information sharing, making sure that wherever we were going to received all the right documents, all the right test results and scans,” she told Global News.
Paravan took on the burden of tracking her son’s paperwork. She created organized binders with detailed logs of Matthew’s seizures and copies of all his medical records, tests, medications and medical opinions.
Even then, she worried she would miss something while commuting back and forth between hospitals.
READ MORE: Report on eHealth Ontario says patients should have access to electronic medical records
Families are not the only ones frustrated. Medical staff also felt a better system was needed.
“If [health-care workers] can’t get the right information they need, or if they know that they are contributing to additional stress for the family because the family has to tell their story over and over again, that’s a challenge for them as well,” said Holland Bloorview president and CEO Julia Hanigsberg.
To ease the burden, SickKids, Holland Bloorview and CHEO launched a new alliance to help patients like Matthew. The Kids Health Alliance is designed to help coordinate and improve care for Ontario’s children and youth.
SickKids president and CEO Dr. Michael Apkon said the partnership is important for enhancing the effectiveness of the system for children, their families, and their health-care providers.
“More and more the best outcomes depend on a very co-ordinated and holistic approach to a child’s health and mental health,” Dr. Apkon told Global News.
While the three hospitals have worked together informally for years in different areas, the Kids Health Alliance signifies a formal partnership with $1.3-million in funding from the Ontario government.
“To build that more efficient, more seamless, more coordinated experience for families, and to be able to sustain high quality pediatric care as close to home as possible,” said Alex Munter, president and CEO of CHEO.
READ MORE: A look at where Ontario healthcare dollars are going
SickKids, Holland Bloorview, and CHEO will collaborate on research and best practices in the hopes of making transitions easier for children transferring from one provider to another. This would include better access to health records, so professionals that are caring for the child will have the information they need.
The partnership plans to expand to include other pediatric health-care providers, including community hospitals, rehabilitation services and mental health services.
Ontario’s Patient Ombudsman
Christine Elliott is Ontario’s patient ombudsman. She says her office has received close to 1,500 complaints since July 2016. The complaints are for patients of all ages and include how care is coordinated and communicated. She hopes the Kids Health Alliance will make receiving care not only easier but safer for families.
“It’s frustrating for parents and caregivers, but it’s also a little bit frightening because you always worry that if you’re giving histories to three or four different organizations, memories fade after time and you’re under the day-to-day stress of caring for a very ill, medically complex child,” Elliott told Global News. “So I think it’s the safety factor, is really important too, which this announcement today addresses.”
Stephanie Paravan also hopes the partnership will improve the safety and quality of care for patients and also ease the burden on parents struggling to keep track of their children’s paperwork.
“To know that families wouldn’t have to worry about that, they can focus on the care of their child, I think it can make a huge difference,” she said.