A complex, far-ranging mental health project is quietly happening in BC. It's called the Child and Youth Mental Health and Substance Use (CYMHSU) Collaborative. I know, I know — it's an awkward mouthful of a name, but it represents a very important initiative: it is bringing together multiple individuals, organizations and ministries who are all working together across BC to increase the number of children, youth, and their families receiving timely access to mental health services.
If you have any exposure to child and youth mental health issues, either as an individual or a parent, you will know that the current system of care in BC is often confusing and uncoordinated. While individual professionals are highly competent, caring and compassionate, the services are split across multiple sites and ministries. If youth show up at ER departments or need urgent admittance to an adolescent psych unit in hospital, that falls under acute care services, the regional health authority and the Ministry of Health. Some specialized services for mental health issues, like eating disorders, are concentrated at BC Children's Hospital. The Ministry of Children and Family Development, however, has the mandate for Child and Youth Mental Health Services in the community for ages 0 to 18, and its clinics and intakes generally do the assessments, diagnosis and treatment. Many families and children first go to their family doctor when mental health symptoms arise, and that GP may either diagnose and treat on her own or refer to a pediatrician or to MCFD clinicians for more advanced diagnosis and care . Often, however, it is teachers and school counsellors, under the umbrella of the education system, who see the child or youth struggling first with potential mental health issues and those school counsellors then try to connect with any of the previously listed entities.
As you can imagine, communication and coordination between all the different players is not easy. Each system has their own hierarchies, their own referral networks, their own rules about information sharing as well as their own IT computer programs that don't communicate with the other. Cooperation across both administrative and geographical boundaries is difficult. Kids can fall through the gaps and families, who are under a great deal of stress in the first place, can flounder.
Yet the need for help is so great. An estimated 75 per cent of mental health issues start by adolescence and persist into adulthood. Early help can often mean the difference between a short term episode or a life-long challenge. Some 140,000 BC youth are experiencing mental health issues and of those, as many as 60,000 of those may not be accessing timely service.
Sometimes, due to fear or stigma, youth and their families don't seek help because they hope symptoms are temporary and will pass. Other times, the lack of timely access arises because the system is too confusing for some families to navigate. Yet every day, too, BC children, youth and families are getting the help they need from skilled professionals who are devoted to making a difference. We — now numbering hundreds in the CYMHSU Collaborative — are trying to decrease the former and increase the latter.
The Collaborative is jointly funded by Doctors of BC and the government of BC. I have been working with it for more than 18 months now, helping with internal communications, interviewing youth families and care providers about their experiences with the system, the barriers they have experienced and their ideas for solutions, helping raise awareness about various child and youth mental health conditions with the general public through a series of articles, and helping tell stories of the Collaborative.
Last week I was in Vancouver for a two-day CYMHSU Collaborative conference with some 350 people from all over the province — youth, families, GPs, pediatricians, psychiatrists, mental health counsellors, social workers, educators, RCMP, administrators from three ministries and five health authorities, and more. It was a fantastic experience of learning, engagement and focus that was, honestly, thrilling to be part of. I tweeted about it under #united4CYMH and that short hashtag is descriptive: we — a huge honkin' group of us from all walks of life — are all united to improve child and youth mental health services in BC.
But the Collaborative itself is not an easy project to write about or explain. That is because it has so many moving pieces and so many people working together on a wide array of projects, with more arising almost every week. I can't even begin to do it justice in this long blog post, but I will try to give you some sort of feel for the panoply of activities that fall under the CYMHSU Collaborative umbrella.
But first about that name — Collaborative. That word now has a specific meaning in health care. It denotes a process of healthcare improvement that originated out of the US Institute of Healthcare Improvement (IHI.org) two decades ago that is now being used worldwide. Sometimes called a "structured collaborative," under this model individuals come together to tackle a problem, in this case the system of child and youth mental health services. Because it is too big to tackle all at once and no single change is enough, local action teams are formed to commit to working together to improve a specific problem or issue in their own community. Then all the local teams come together in larger "Learning Sessions" (or conferences) to share what they have done and to learn from each other's successes or challenges. Then they go back to their communities to continue working together on the local issues or tackle another project, which all feeds up into the regional and provincial picture.
We started in spring 2013 with eight local action teams in eight communities in the Interior, including Kamloops, Kelowna, Williams Lake/100 Mile, Kootenay Boundary, East Kootenays and more. Then in June 2013 some 175 of us met in Kelowna for the first "Learning Session." At that point many in attendance had never met each other despite working in the same field, sometimes in the same community, but under one of the different systems. To be honest, at the beginning, there was a lot of defensiveness and suspicion, each one seeming to believe any problems arose from other sectors, not theirs.
But over the last 18 months, walls have come down, relationships have been built, cooperation is flourishing, kids' care is being better coordinated. It has been remarkable to witness.
This past week's conference was the original group's 5th learning session. Now we are all old friends working on projects together. But we have also now spread well beyond that initial group. Now we number more than 500 and 14 more local action teams have formed across Vancouver Island and new ones are joining and in development in the Fraser and Vancouver Coastal regions. A total of 10 province-wide working groups are tackling systemic barriers, such as developing an Emergency Room protocol which will standardize a compassionate, evidence-based approach to assessment and care for youth who present to the ER in BC. Information sharing agreements across the disparate players are being developed, wrestling with the challenging issue of privacy protection while still enabling adequate sharing of personal and medical information. The issues of recruitment and retention of child psychiatrists is also being tackled. Establishing integrated hubs for wrap around care through schools and other avenues are also being explored and developed. Educational workshops on clinical issues, like eating disorders, are being held in the regions. And that is just half of it!
We have a ways to go before we can say the system is smoothly coordinated, but the energy, commitment and creativity in the room is inspiring. You can read a bit more about the project here.
What is most encouraging, however, is the true embracement, by all the participants, about what family-centred care actually means. Back in June 2013, a few families with lived experience had been invited to attend the conference, but the feeling, to be honest, between the families and the providers, was more of an "us and them" dynamic. That has all changed. Now families and youth are front and centre. They are active, essential parts of ALL the action teams. They are on the working groups. They are the drivers behind the meaningful change — they're the arbiters of what works and what doesn't.
More than 60 youth and families with lived experience were at the Vancouver conference last week and they were its beating heart. They are the check, for all of us, that the changes we are trying to make will truly improve the system for youth and families.