The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskPaul@Sunnybrook.ca
Question: My daughter is avoiding school and has a lot of anxiety and seems to be depressed. She has been acting out, too, cutting herself and stealing things. I’m worried she is also getting involved in drugs. We got her to talk to our family doctor and he referred her to a specialist but there is a very long wait for an appointment. I’m worried about what’s going to happen to my daughter in the meantime. We live in Toronto. A friend recently saw an article in a newspaper that said Sunnybrook has a new program to help families with adolescents who have mental health problems. Can you help us?
Answer: I would say there’s a very good chance that the Family Navigation Project can help. It was set up to assist parents of youth between the ages of 13 and 26 who are dealing with mental health issues, addictions, or both.
In fact, the impetus for the project came from parents who struggled to find the right treatments for their kids. Parents might wait months to get their child into a particular program, only to learn that it’s the wrong type of service or program or treatment.
They didn’t want other parents to experience the same frustrations. So a group of them approached Dr. Anthony Levitt, a staff psychiatrist at Sunnybrook Health Sciences Centre, with the idea of putting together a program that would guide families through the confusing maze.
After several years in the making, the Family Navigation Project is finally up and running. Its aim is to serve families who live in the Toronto area. All you need to do is phone 1-800-380-9367 and you can expect to get a response back within one business day. (You can also send an email to firstname.lastname@example.org)
“It takes a lot of courage for parents to pick up the phone and make that call. So we really want to connect with them as soon as we can,” says Jillian Polson, one of the navigators.
Your navigator will ask you a series of questions about your daughter and may later reach out to others involved in her care such as your family physician. But before contacting other health-care professionals with knowledge of her case, the navigator must first obtain your daughter’s permission in order to respect her patient confidentiality rights, which are protected under the Mental Health Act.
“We navigate best when we have information … and we often request consent from the youth to allow access to assessments and consultations that have been done in the past,” says Dr. Levitt, who is the medical director of the Family Navigation Project.
Once all this information is collected, the team of navigators, and Dr. Levitt, will review your daughter’s case. Much thought is given to the most appropriate treatment options specifically matched to your daughter and your family’s needs.
“We brainstorm and share ideas to come up with a care plan,” says Dr. Levitt.
Ms. Polson says families are usually offered a few options so they can pick the one they intuitively feel is best. Equally important, the navigator will then provide ongoing support.
“When a family contacts us, we don’t just say, ‘call this number, good luck with everything’,” explains Ms. Polson. “We follow-up to see how the treatment is going.”
If something doesn’t work out, the navigator is there to back up the family with an alternative plan. And should additional assistance be needed following treatment, the navigator will help make those arrangements, as well.
As Dr. Levitt puts it: “We stay in the boat with you throughout your journey.”
It is this ongoing assistance – combined with clinical expertise – that makes the Family Navigation Project fairly unique in the world of mental health.
Dr. Levitt says “we have tremendous resources in our [health care] system and some remarkable facilities.” The problem is that many families have a hard time finding the appropriate treatment program for their loved one, and often wait times are unacceptably long.
For instance, some programs deal solely with youth who have mental health issues, while others focus exclusively on substance abuse.
Yet many youth need a program that addresses both problems simultaneously. Without the right match to resources, they can get lost in the system, leading to a delay in the start of treatment, and, for youth in crisis, this can lead to unnecessary suffering and even dangerous consequences.
“Families are left with no sense of what they are supposed to be doing and where they are supposed to be going in the system,” says Dr. Levitt. “A lot of time can be wasted which results in a lot of unnecessary pain and suffering. The role of the family navigation project is to find the right treatment as soon as possible.”
And even if a youth ends up having to wait to get into a program, the fact that the family has a plan in place sometimes goes a long way to easing the family’s anxieties, says Dr. Levitt.
“We have a view from inside the system … so we are able to identify the right pathways to the right resources,” he says. The navigators actually spend about a day each week visiting various treatment facilities and getting to know the staff. “We really get a feel for what a program offers,” says Ms. Polson.
The cost of treatment is an issue that will likely need to be discussed with your navigator. Not all programs are covered by the public health-care system. As an outpatient, a therapy session with a clinical psychologist can cost up to $250 an hour. A course of treatment in a residential facility – where the youth stays overnight for a prolonged period – can be very costly. One advantage of the private clinics is that wait times can often be significantly shorter than publicly funded programs, but the issue for many families that contact the Family Navigation Project is, of course, the cost.
Some families are able and willing to pay for that care, including specialized treatment facilities inside and outside of Ontario. But others can’t afford the additional expense. Your navigator will take your financial situation into account when looking for programs.
“We find resources regardless of the financial capacity of the people who call. We are connected to service providers in both the public and private health care systems and we work with the family according to their wishes, capacity and need,” says Dr. Levitt.
Most of this care-planning work with the families is done over the phone or through emails, which can be more convenient than face-to-face meetings.
“These families are in crisis,” says Dr. Levitt. “To try to book an appointment, leave home when the child is unwell, and come speak to us is very difficult for many families.” By communicating on the phone “we can offer times that work for people – there is a lot more flexibility this way.” And with follow-up emails “we can keep up-to-date with many families on a daily basis by just a few words back and forth,” adds Ms. Polson.
Families who have already been through the mental health system with a troubled youth continue to play a supportive role for those just starting the process. “Our parents do peer-support for families who need to know that someone else has been there and got through it,” says Dr. Levitt.
So far, the navigators have handled about 180 cases since the project had its unofficial start last fall. (Its official launch is this month – June.) With four navigators, a program manager, an intake worker/administrative assistant and three doctors pitching in, as well as several parent volunteers, the team is already operating beyond its original projections. “We thought we would serve about 125 in the first year… we are finding that the need is greater than that. In fact, we projecting close to 400 families will contact us and find help in this first year,” says Dr. Levitt.
For now, the team’s focus is confined to youth in the greater Toronto area. But Dr. Levitt thinks the project could serve as a model for other regions and age groups. “Our goal is to have a network of navigators across the province … patients could move across the system to get the most appropriate care.”
He notes there are several other organizations helping families find their way through the mental-health system in other parts of Canada such as the Parents LifeLine of Eastern Ontario and The FORCE Society for Kids’ Mental Health, which operates in British Columbia. These groups were started by parent volunteers and “they do a remarkable job in their communities,” says Dr. Levitt.
The Family Navigation Project also operates under the guidance of a volunteer parent advisory council. “These parents are passionate about the Project and spend countless hours helping at every level,” he adds.
The Family Navigation Project differs from FORCE and PLEO in that the navigation is led by clinical staff who work closely with parent volunteers. “The system knowledge of the clinical staff is particularly helpful in matching patients to the right treatment programs,” says Dr. Levitt.
So, hopefully, the Family Navigation Project can also help you and match your daughter up with the most appropriate care, as quickly as possible.
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families, relying heavily on medical and health experts. His blog Personal Health Navigator is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Email your questions to AskPaul@sunnybrook.ca and follow Paul on Twitter @epaultaylor