Lost in the Maze

Debbie Sesula, MA, RTC, CPS and Shainul Kassam, MA

Reprinted from "System Navigation" issue of Visions Journal, 2014, 10 (1), pp. 5-7

The mental health system in BC is a complicated maze. It can be distressing to experience symptoms of mental illness and struggle with fear, shame, denial and ill health all at once; then negotiate help for yourself or your loved ones. Unlike those with physical health issues, people with mental illness are often ignored, not believed or discriminated against. Additionally, many people don’t know what services exist, who provides the services or how to access them.

Most mental health conditions, however, are treatable, and recovery is the expectation, not the exception. Those who get help are generally satisfied with the help they receive, but getting the right help is challenging and feels like walking through a minefield of barriers.

The ‘5As’ (Affordability, Availability, Accessibility, Accommodation, Acceptability), or barriers to receiving public mental health services have been identified and written about often in the literature since the 1980s.1,2 In our opinion, the joys and pitfalls of these 5As are still very much alive—as reflected in our personal and professional experiences.

The 5As: Debbie’s experience

I began receiving mental health services in my last year of university at the age of 27, even though I needed services years prior. Thus began a 25-year roller-coaster ride of being lost in the maze of the 5As, with bouts of wellness, suicide attempts, psychosis, depression, anxiety, self-harm, hospitalizations, medications, electro-convulsive therapy, mental health services, outpatient services, residential facilities, psychosocial rehabilitation, vocational services and several attempts to access affordable housing.

Affordability (my ability and willingness to pay)

One time, it took me seven years to find the resources I needed. Although government-funded and other not-for-profit services were offered at no cost, they were limited in what they provided. To receive the help I needed, I had to pay for private counselling. Being on disability benefits, this was a real hardship. Another time, an intensive type of treatment was recommended. It was only available privately and was very expensive. The cost prevented me from accessing this service which resulted in a further decline of my mental health. Finding subsidized housing was another challenge I endured for many years. Once this was in place, I was able to work on getting well and staying well.

Availability (the waiting time and whether the service met my needs)

I was once discharged from an outpatient psychiatry program for being disruptive and threatening suicide, and found myself in the hospital again where it was recommended that I receive electro-convulsive therapy (shock treatment). When I refused, I was told that if I didn’t consent to the treatment, I would be committed and have no choice, so I consented. After discharge, I received services for nine years, but suddenly one day I was told my file was going to be closed. I asked that services be cut down slowly, but my request was denied and the only referral I was given was to a psychiatrist with a waiting list.

After 12 years of not needing mental health services, I slipped into a deep depression just as I finished obtaining my master’s degree. I went to employee counselling services, but needed more intensive care and therapy. My general practitioner referred me to the psychiatric outpatient program. I waited six weeks for an appointment with a psychiatrist which only added to the distress I was already feeling.

Accessibility (the referral process and my ease of being able to physically reach the location)

Oftentimes, the formal process of accessing services is challenging. When you factor in how unwell a person with a mental illness can be, this can be a double-whammy. For example, I remember having to go through a lengthy phone intake process and attend an orientation to fill out a number of questionnaires before even obtaining an appointment. However, I did receive an appointment within a week.

When I was hospitalized the first time, the hospital didn’t have a psychiatric ward, and after a few weeks I was transferred to a hospital two hours away from my home and community. At another time, I had to travel at least one and a half hours each way to receive specialized services from a psychologist.

Accommodation (the hours, duration, location and transportation constraints)

When I was working, it was a challenge to obtain services of any sort, as they weren’t offered outside of regular working hours. When I moved to a different residential address, I had to get a new referral to receive mental health services in the community I now lived in. Because I worked in the mental health field, I expressed my discomfort of receiving services in the community where I worked. But I was too distressed to advocate harder to receive services elsewhere. Besides, it would have been a one hour commute.

Acceptability (my comfort with the use of services)

Having one particular diagnosis (borderline personality disorder), I experienced judgment and condescending attitudes because of that diagnosis. Twice, I inquired about attending a particular treatment group that was recommended and was told I wouldn’t be a good fit. I did not experience the same with a later diagnosis of bipolar disorder. As mentioned above, when I needed help that wasn’t available, I saw a private counsellor. When I told the mental health team, I was told that my file would be closed if I continued to see someone privately (something about having more than one provider involved interfering with treatment). I kept going but never told them.

The 5As: Shainul’s experience

As someone whose job involves steering people to the right resources and services, I can totally relate to Debbie’s frustration with the mental health system in BC. In my work, I and the people I work with continue to encounter challenges on a daily basis. The top seven challenges (presented in first-person ‘snapshots’) include the following:

  1. The hospital released my son just hours after it took so much effort to get him there. We waited for five hours in ER. He is clearly experiencing symptoms of paranoia and psychosis, but convinced the hospital staff there is nothing wrong with him. What do we do now? I am too scared for my safety to bring him home.

  2. I am really depressed, have severe anxiety, cannot hold down a job or get out of the house, and am taking some medication. But my local mental health centre refuses to accept me as a client because my symptoms are not severe enough to warrant their services.

  3. My doctor recommended that I seek the services of a counsellor or psychologist. I was able to access a counsellor through my extended health benefits, but $500 only covered three sessions. Is there somewhere where I can access free counselling on a long-term basis?

  4. My doctor has referred me to a psychiatrist. There is a three-month wait-list. What do I do in the meantime?

  5. My daughter has been involuntarily committed to the psych ward, but the hospital staff won’t tell me anything about her diagnosis or treatment.

  6. I have a concurrent disorder and need to access mental health housing with some supports in place. There is a one year wait-list. If I don’t find something in six weeks, I will be homeless.

  7. My mom was released from the hospital, without any referrals into the community, one day after a suicide attempt. She refuses to take her meds and self-medicates with alcohol, and I am really worried about her safety.

My own personal experiences of accessing services for people I care about (elderly and youth) have been full of challenges, in spite of my own breadth of knowledge regarding services in BC. These experiences include being turned away from the hospital after waiting for seven hours to see the Registrar in ER. On another occasion, they were released too early because of lack of beds. When they inevitably needed another visit to the ER a couple of days later, we had to go through the whole admission process all over again, including the excruciating wait. We know the exhaustion of having to repeat our story with every new professional we encountered on our journey.

Additionally, we have experienced not being given any explanations about the necessity of experimenting with the medications or the consequences of non-compliance (solitary confinement in a straitjacket). I have also had to wrestle with the cultural stereotyping, judgements and condescending attitudes that some health professionals assume about their clients and the differences that shape their experiences and recovery.

Having said that, as soon as I was able to find my voice, and learn how to negotiate and advocate for my family, we were able to get connected to, and receive, invaluable services. Unfortunately, when you are in the throes of a deep depression, or frozen with panic and anxiety, or experiencing a totally different reality, it is extremely difficult to be accountable for yourself or for your loved ones.

Coming back to the 5As, we wish we had the answers, but we do not. As you read through this edition of Visions, our hope is that you will consider the importance of the 5As, whether you are a service provider or a recipient of services.

 
About the author

Debbie has a master’s degree in Leadership. She trains and manages peer support workers, and develops and facilitates recovery-oriented programs with Vancouver Coastal Health. She is also Education Coordinator with CMHA North/West Vancouver and Pacific Bipolar Foundation, a BRIDGES and WRAP trainer, and is a member of Peer Support Accreditation and Certification Canada’s Certification Committee. Among Debbie’s numerous awards are CMHA’s Consumer Involvement Award, Coast Foundation’s Courage to Come Back Award and PsychoSocial Rehabilitation Canada’s Resiliency Award

Shainul has a master’s degree in Library and Information Studies. As Coordinator of Volunteer Services and Mental Health Navigation at the Canadian Mental Health Association’s BC Division, she has 15 years’ experience providing frontline support and referral services. Additionally, she trains volunteers to empower individuals across BC with the knowledge needed for their road to recovery. Shainul has received CMHA BC’s Outstanding Community Volunteer Award for her courage to speak up that help is available and recovery is possible  

Footnotes:
  1. Penchansky, R. & Thomas, J.W. (1981).The concept of access: Definition and relationship to consumer satisfaction. Medical Care, 19(2), 127-140.
  2. Wyszewianski, L. & McLaughlin, C.G. (2002). Access to care: Remembering old lessons. Health Services Research, 37(6), 1441-1443.
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