Best Practices - Concurrent Mental Health and Substance Use Disorders

The Consumer's Experience and Perspective

In order to keep the best practice advice grounded in the experience and expressed needs of people with concurrent disorders, five focus groups were held with current or former consumers of mental health and substance abuse services, to determine those aspects which had implications for planning integrated programs and systems for screening, assessment and treatment/support. We held two groups in Quebec, two in Ontario and one in British Columbia. Participants were recruited through local mental health and substance abuse programs or integrated concurrent disorders programs. Each group had between 5-8 participants who were remunerated for their time and transportation costs. They consented to the use of their comments for the purposes of this project. The two groups that took place in Quebec were conducted in French. Each group was facilitated by a trained mental health or substance abuse professional and discussion was guided by a predetermined topic list (see Appendix H). The discussion was summarized and analyzed for themes relevant to the objectives of the project. The focus here is on the main themes that emerged and the implications at the system level.

Results of Focus Groups

There was a very high level of consistency across the various groups. The strongest theme that emerged was the additional and severe stigma associated with having both substance use and mental health problems. The stigma expressed itself in various forms, including repeated and chronic self-harm experiences, self-deprecation, the fear of being judged, and the hurtful experience of judgmental attitudes.

I would really like to say the threat of being punished for being an addict and having any sort of mental illness, there always seems to be this threat hanging over that we are in some way responsible for this, we brought this upon ourselves, and if we don't do A, B or C then our children will be taken and our welfare will be cut, our housing will be gone ... there's just such an extraordinary threat and that just absolutely add on to already extraordinary pressure, and I mean its very demoralizing.

Feel like there is a lot of pressure not to get help, its like get on with your life, get back to work, what are you doing, you're not working, well why aren't you working...

A related theme was the high need for support and continuity of care to deal with their wide range of health and psychosocial difficulties, including for example, the need for housing, prenatal or child care, income, employment, and money for transportation. The support of family, friends, employer and the agency support worker were seen as critical.

I've had a mental health worker to stand beside me, but she's always, always been there for me and I think that's what really made me better, that constant, constant continuous care.

That there are clearly two systems of care was another emergent theme. For some people there were feelings of immense frustration and anger with being shunted back and forth between mental health and substance abuse agencies, and with the lack of openness in both types of services to talk about their dual sets of problems. Some people felt that when in the substance abuse system they had to treat the substance abuse problem first and they were openly discouraged from talking about their mental health issues. Others expressed frustration with the mental health system.

What (mental health) providers do is they'll look at me and say I'm in a real abuse stage, they say forget about the mental health issue you've got a real substance abuse problem and you've got to go get help for that and either they ignore the using or the fact that I have an addiction, or else they won't even deal with the mental health aspect of it because I've been using.

For some participants there was an acceptance of the two systems of care; an acknowledgment that "this is how things are set up"; and even expressions of surprise that one might deal with substance use problems in a mental health program and vice versa. For example, those holding this view accepted the fact that they would deal with substance use problems only within a substance abuse program. Not only did service providers not ask about the other issue, this was not always seen as a concern because clients felt it was up to them to disclose the information. Only once they had established a relationship of trust with the service provider would they feel comfortable discussing both issues. The need to have a strong and supportive relationship with a family physician was also noted as he/she can "hold the key" to navigating the larger system effectively.

A fourth emergent theme was that recognition of the problem was an important first step and that there were often years in between recognizing and dealing with their dual problems of substance use and mental health. Treatment for the two sets of problems would therefore begin at different times and quite separately. This failure to recognize the concurrent disorders was connected to several related issues including the common experience of misdiagnosis due to the interacting and often masking effects of the substance use, and the lack of education and training among professionals they encountered along the way. This was compounded by a fear that if you "reveal too much" this can prevent you from receiving treatment or be more likely to lose support, children and family connections.

One of the biggest problems that I ran into was the issue of misdiagnosis because you know active, addictive drug use or alcohol use, or anything else will parrot particular mental health disorders.

Other major themes were the difficulty getting into the system and, once connected, the frustration in dealing with poorly coordinated services. Concerns about accessing the system ranged from there being inconsistent definitions of whom they would treat, to outright refusal to accept you if you had concurrent disorders. Others expressed frustration with the lack of basic information about what is out there for services and supports.

When you ask for help, that's when you need it.*

When you do decide you do want to get help you just have to wait for so long; there should be enough people; and getting turned down and going to different places to try to get help. Some places you're not bad enough for and too bad for others.

There should be one centre of information so that there is no confusion as to where to look, even if it's small enough just to send people in the right direction.

Yeah there isn't just one place - its almost as if the left doesn't know what the right is doing.

The concerns about lack of cooperation and coordination among service providers were even more revealing about the difficulties encountered navigating the system. In particular it was seen as difficult to build a trusting relationship with a service provider if you do not see them on a continuous basis.

I don't find that there is good communication between, like even when you sign a release form I don't find he's getting the information or they are relaying it. So there's a real emptiness there, and you end up providing the same information or lets say getting tests done at a whole bunch of different places – it could be done once.

I've gotten help for each individual thing but to get help for, like at the same time, you fall between the cracks and if one of your disorders is worse than another and then one doctor thinks your seeing somebody else, basically nobody's helping you, nobody follows up, you kind of disappear in there.

Basically a coordination of services, a central place, a person, that's what's missing.

This admission, that admission, this specialist, that specialist but nobody's really doing anything, nothing's really getting done, just a whole bunch of appointments going nowhere.

Finally, participants voiced their concerns about the lack of resources. They commented in particular on the poor access to counselors, especially in rural areas, as well as the need for more treatment programs and groups specifically for individuals with concurrent disorders. Those who were involved in a specialized concurrent disorders program were very supportive of their program and spoke positively about their experience.

* Translated from: "Quand on demande de l'aide, c'est là qu'on en a besoin".

System Implications

The following implications are drawn from the experiences discussed during the focus groups:

• screening for concurrent disorders, followed by comprehensive diagnostic assessment should be viewed as critical components of local mental health and substance abuse systems;
• there must also be an openness to deal with both the mental health and substance use problems regardless of the doorway into the system the person has entered. There must be an emphasis on engaging the person in a non-stigmatizing, trustworthy environment and accepting the person where they are at in terms of the degree of program or system integration they feel comfortable with at that point in time;
• there is a need to reduce waiting times and for better access to information about what services and supports are available in the community. This could include better sharing of information among the service providers in the community as well as more centralized information services (e.g., 1-800 lines; web sites);
• there is a need for good linkages across services and, in general, improved coordination. Continuity of the caregiver is critical to the provision of needed supports. Continuity also helps develop the kind of trusting relationship which may be necessary for full disclosure of the nature and severity of the substance use and mental health problems. Assessment, therefore, must be seen as an ongoing rather than a one-off aspect of service provision;
• the psychosocial needs of people with concurrent disorders, particularly co-occurring severe and persistent mental illness, are significant. Issues such as housing, childcare and money for transportation can seriously disrupt the best of intentions for dealing with substance use or other aspects of the co-morbidity. Support for these needs, particularly through community outreach, must also be a critical component of local service delivery systems;
• there is a critical need for better training of mental health professionals in substance abuse and of substance abuse professionals in mental health. The family physician can also play a key role in helping the person navigate the local network of services and needs to be well informed and trained to do so;
• the planning of services/supports, and systems of services/supports, for people with concurrent disorders must involve people who have experienced these problems directly as well as their family members.