Introduction

In 2009, the Native Mental Health Association of Canada and the Mood Disorders Society of Canada partnered to commission a series of focus groups across Canada as part of their Building Bridges initiative. The report reviews the findings from 14 focus groups held in Eastern Canada between November 2009 and January 2010. Participants included Aboriginal and non-Aboriginal consumers, family members/caregivers and service providers. The purpose of the discussions was to further knowledge and understanding of what happens when people attempt to access mental health and/or addictions services, what happens when they succeed in accessing services, what makes them feel safe and comfortable or not with the services, and what actions they take to protect and promote their own mental health.

What brings people to mental health or addictions services?

There are many reasons why people seek mental health or addiction services. Help-seeking is frequently precipitated by some sort of crisis. About one-half of the consumer participants shared the issue that initially caused them to seek help and the most common responses were: serious depression, which often included suicidal thoughts, impulses or attempts; substance abuse; or substance abuse combined with a mental health problem. Close to one-third of consumers reported a history of physical and/or sexual abuse including a majority of the Aboriginal consumers, many of whom endured abuse that was systemic, severe, and institutional in nature, i.e. it occurred over long periods of time in foster care, group homes and residential schools.

When service providers talked about why people present for services, they gave different reasons depending on the mandate of the organization, although often the person seeking help was experiencing some type of life crisis. Service providers also noted that some people will not seek help no matter how desperate their circumstances because of shame, stigma or fear of consequences such as a job loss. This is more of an issue in small communities and within certain ethnic communities. Some Aboriginal people have an ingrained mistrust of mainstream service providers due to their history of colonization and systemic abuse, which makes it difficult for them to use these services.

What challenges do people face when trying to access services?

With the exception of a small minority of consumers, all of the focus participants experienced some difficulties accessing mental health or addictions services. The main challenges people face when seeking services are listed below.

• Lack of awareness of what services are available and how to access them, reported by seven groups.
• Unavailability or limited availability of services, reported by 14 groups.

This includes accessing family physicians, community-based psychiatrists, non-medical interventions such as psycho-therapy, treatment for concurrent disorders and culturally safe and sensitive services for Aboriginal people and newcomers. Services are especially limited in rural and remote areas.

• Long wait times for services, reported by 12 groups.

• Having to push hard and advocate for themselves to get the care they need, reported by four groups.

What happens once people access services?

What happens when people succeed in accessing services depends on what services they access, where they access them and who is providing them. To some extent, their experiences are also influenced by personal characteristics such as race/ethnicity, socioeconomic status, and the nature of the problem. The following represents the themes that emerged in terms of experiences accessing mental health and addictions services.

• Negative experiences at service entry points, reported by nine groups.

It is not uncommon for people to have unpleasant experiences when entering the system of services, even when they are the ones reaching out for help. The entry points where people most frequently report experiencing poor treatment are crisis services and hospital emergency rooms. Their concerns pertain primarily to unnecessarily long wait times, over-use of police and security guards who are not properly trained, and disrespectful treatment by service providers.

• Concerns about assessments and diagnoses, reported by 13 groups.

Concerns revolve around the timeliness and accuracy of diagnoses, including the criteria used to make diagnoses and the fact that diagnoses rarely involve a consideration of the consumer’s life experience and cultural context. This is a concern for Aboriginal people in particular, many of whom are living with the effects of inter-generational trauma from colonization.

• Experiences of disrespect, condescension, stigma, racism or discrimination from service providers, reported by 14 groups.

Participants from all of the focus groups related incidents where consumers were treated disrespectfully and with a distinct lack of compassion by service providers. This has happened with a broad range of service providers including mental health care providers, health care providers and others (e.g. welfare workers). Many consumers talked about being treated like a label or a number, rather than a person. Many also spoke of feeling unheard, judged and “looked down on”, as if they were inferior in some way to the service providers. Those who had tried to complain found that their complaints were ignored or dismissed. People who have addictions, are poor or are Aboriginal are especially likely to feel judged and stigmatized and to experience discrimination from mental health service providers.

• Biomedical, rather than holistic and recovery-focused services, reported by 14 groups.

Concerns here are based on a heavy emphasis on medication as the main treatment modality, the lack of attention by providers to the context within which mental health or addictions problems arise and the tendency to treat consumers as diagnostic labels rather than whole persons.

• Fragmented and uncoordinated services, reported by 12 groups.

Because organizations tend to operate as “silos”, services are limited, not linked with each other, and difficult to access. Consumers with multiple needs are often bounced around from one service to another. As a result, they have to tell their stories again and again and there is no continuity of care. This is especially frustrating for people when moving to one service system to another, i.e. from children’s mental health to adult services. Consumers and family members find it very challenging to have to navigate these service systems on their own and coordinate their own care. The disconnection between mental health and addictions services is especially troubling, as participants see a strong linkage between the two. One of the largest gaps seems to be between the health system and the community organizations that offer self-help and peer support programs. People often stumble upon these supports on their own, having failed to receive any information about them from health care providers.

What makes people feel safe?

Consumers and family members were asked what makes them feel safe and comfortable when they are receiving services. The key themes that emerged from these discussions and the number of focus groups within which they emerged are listed below.

• Accessible, compassionate and respectful service providers, reported by ten groups.

Many of the focus group participants spoke about feeling safe when they accessed a service provider who was kind, compassionate, accepting and respectful. These providers value the consumer’s lived experience. They do not judge, condescend or talk down to them. They are authentic and real and willing to share information about their own experiences. They try hard to eliminate inherent power imbalances and work with the consumer, using a team approach. They are available when needed or they provide back-up. This creates a sense of trust. Consumers feel cared for and cared about. These service providers could be working within the formal health care system or not; what matters is how they interact with the consumer.

• Coordinated services and continuity of care, reported by six groups.
• Support from people who understand what they are going through, reported by six groups.

For many consumers, support from people who understand their experiences is critical in helping them to feel safe and to begin to recover. A few have received this kind of support within the formal system of services. Many suggested however that it is unlikely that mainstream service providers could relate to their experiences, and they are altogether more apt to get this kind of support from community organizations especially those that offer peer support and self-help groups.

• Respect for confidentiality, reported by three groups.

What makes people feel unsafe?

“The mental health system and safety don’t really go together.”
– Consumer, Halifax, Nova Scotia

Consumers and family members shared what makes them feel unsafe or uncomfortable when accessing services. Key themes that emerged related to feeling unsafe or uncomfortable are listed below.

• Feeling alone, uncared for, unheard, judged or disempowered, reported by eight groups

When people feel that no one cares about them or listens to them, or that they are being judged and found wanting, this makes them feel uncomfortable and unsafe. The power imbalance between consumers and service providers can make consumers feel unsafe, especially if they have emigrated from a country where abuse from the military or police was common. This is also true for consumers who are mandated to take treatment.

• Models of service that do not meet their needs, including their cultural or linguistic needs, reported by eight groups.

Consumers and family members may feel unsafe when models of service do not meet their specific needs. For example some feel safe only when they are at home, often because of a history of abuse, and they would prefer to be able to access services at home through telephone lines or outreach visits. Many consumers, family members and service providers also noted that services are not sensitive to the unique cultural and linguistic needs of newcomers and Aboriginal people.

• Experiencing racism, stigma and/or discrimination, reported by seven focus groups.

What needs to be improved?

All of the focus groups were asked what they would recommend to improve the system of services. The key themes are listed below, along with the number of groups endorsing each theme.

• Provide holistic and culturally safe services, using a recovery model, reported by 13 groups.

An overwhelming majority of focus groups emphasized the need for a more holistic approach to service provision. This means moving beyond a narrow biomedical perspective and viewing each individual as a whole person with a unique history, current life circumstances and strengths as well as challenges. It also involves a focus on recovery and on all of the things that support this, so that people with mental health and addictions issues can live meaningful and productive lives. This would necessarily involve significant changes to organizational cultures and practices and to service provider training. It was noted however that such changes could be more cost-effective over the long-term.

Integral to a holistic approach to service provision is an understanding of cultural differences and unique cultural needs, and tailoring services to meet these needs. This is especially important for Aboriginal people, many of whom would like to develop and deliver their own services, using their own approaches. Others spoke of the need to have more Aboriginal people as decision makers, for mainstream organizations to train existing staff to provide culturally safe services and examine their hiring practices to ensure that they have representative numbers of Aboriginal staff.

• Build capacity for a continuum of coordinated services, reported by 13 groups.

Almost all of the focus groups identified a need for a continuum of coordinated mental health and addictions services. Many suggested that service providers should receive training about the full range of available services and supports, so they are able to refer people as needed. This includes educating health care providers about community-based resources such as self-help, peer support and traditional Aboriginal healing programs.

• Make mental health and addictions a funding priority and direct funding to have the most impact, reported by 12 groups.

Almost all of the focus groups indicated that mental health and addictions services need more resources in order to function effectively. Inadequate funding limits the amount and quality of care that can be provided. Several participants commented that mental health is like the “poor relative” within the larger health care system. Some attribute this to the stigma that is still associated with mental health and, especially, addictions issues.

Simply allocating more resources to the existing system of services would not be sufficient for many participants, however. They would like to see a review of funding models and a redirection of dollars to areas where they would have more impact. Some suggested that there might be enough money to provide good services, if it was shared more equitably and duplication of services was reduced.

With regard to where funding should be allocated, a number of participants would like more money dedicated to prevention and early intervention services. Many participants would like to see more resources dedicated to community-based services and organizations, particularly organizations that provide family and peer support services. A number of people said that these organizations are doing excellent work, with woefully inadequate funding.

• Improve public awareness to reduce stigma and discrimination, reported by 12 groups.

Most of the groups talked about the need to improve public awareness to reduce and ideally eliminate the stigma of mental health and addictions consumers. Initiatives aimed at improving public knowledge and awareness should focus on breaking down barriers, so that people do not view those with a mental health or addictions problems as different or “other” from themselves. Awareness training should begin early, in schools, and should involve direct contact with consumers. Public education about the history and unique challenges of Aboriginal people could help to eliminate the combined racism and stigma that many face.

• Make it easier and faster to get services, reported by 11 groups.

The majority of focus groups emphasized the need to improve access to services by making it easier for people to get the services they need, when and where they need them. This includes access to family doctors, to psychiatrists and to other mental health and addictions services. Several focus groups also talked about the need for services that are more flexible, in terms of hours of operation and/or outreach capacity.

• Make services more client-centered, reported by eight groups.

More than half of the participant groups talked about the need for more client-centred models of care. Client-centred service providers treat consumers as equal partners. They offer genuine caring, compassion and respect, value the lived experience of consumers and work with them using a team approach. This engenders trust, which promotes healing and recovery. Client-centred services support consumers in gaining knowledge for self-management of mental health or addictions problems.

• Address the multiple determinants of mental illness and addiction, reported by eight groups.

Eight of the fourteen focus groups emphasized the importance of addressing the multiple determinants of mental illness and addictions. When people do not have a safe and healthy physical environment, sufficient food, decent housing, access to meaningful work and social support, mental health and addictions problems are more likely and recovery becomes extremely challenging.

• Engage and support family members and caregivers, reported by four groups.

While recognizing issues of privacy and consent, family members and caregivers would like to be more engaged in the care of their loved ones. If they had more information and were more engaged, they could be more helpful in the recovery process. Family members and caregivers also need recognition for the important role they are playing, along with support for themselves. It can be stressful and exhausting caring for a loved one with a mental health or addiction problem and this can affect the well-being of the caregiver. Some have found family member/caregiver peer support to be particularly beneficial.

How do people take care of their own mental health?

The seven consumer groups were asked what they do to protect and promote their mental health. The following represents their responses and how many groups provided each response.

• Practicing spirituality and hope, reported by six groups.
• Helping others, reported by six groups.
• Social and peer support, reported by six groups.
• Being open/sharing your experience, reported by five groups.
• Good health habits, reported by five groups.
• Self-education and knowledge, reported by three groups.
• Other: Comedy/humour; Arts and Crafts, reported by three groups.