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By Kathleen Mochnacki

Surveys to obtain information from family caregivers of those with severe mental illnesses can provide an opportunity to get genuinely useful information about significant problems that family caregivers encounter in trying to get appropriate help for their family members or themselves

Such surveys need to recognize how the lack of appropriate mental health services affects our loved ones, how unrealistic mental health legislation affects whether our family members gets treatment or not and the attitudinal barriers that can prevent needed communication between mental health professionals and family caregivers.

Family caregivers of those with severe mental illnesses are a unique community who have experienced first hand what it is like to live under the same roof as a family member with a severe mental illness. Dr. E. Fuller Torrey founder of the Treatment Advocacy Center has said that the only people that know about psychosis are the person with the psychotic illness or a person who lives under the same roof. He had a sister who had schizophrenia. Sadly, when mental health services are planned, we are not consulted and costly mistakes are made.

Not much attention is given to the fact that many homeless people have untreated mental illness. Currently, York Region has engaged York University to conduct research in York Region Ontario. The goal of this research is to include the engagement of community residents/groups, faith-based organizations, service providers, and government representatives to identify important and feasible strategies to support mental well-being of residents in York Region.

My son lives in one of the areas selected for this research. This area includes a drop in for homeless people with mental illness, an encampment, transitional housing for homeless youth, both supportive and supported housing for people with a mental illness, and not for profit and co-operative housing. Drug activity is rampant. Many drug users have untreated severe mental illness. Reliable witnesses have observed people walking around in full psychosis. The local bank locks its doors at night to prevent homeless youth from sleeping in the area where bank machines are.

Yet there is not a word of this reality in the draft of the project which was presented on February 28th. I did bring this to the attention of the researcher who did listen. I also expressed my fervent wish that there be effective communication between our hospitals and community agencies when discharging patients with severe mental illnesses so that there is a smoother transition when people are discharged to community agencies. Family caregivers often have to straddle the divide between hospital and community waiting for the community agency to do an assessment on their recently discharged family member. I was grateful to the researcher for her gracious attention to my input and pray that that my observations will be included in the final draft.

I am not alone in my observations. Marilyn Baker, a mother of a son with schizophrenia, experienced the horror of her son being discharged in the middle of the night during freezing weather from a Toronto Hospital. She states: “This was when I learned that our mental healthcare system is a cruel joke – a patchwork quilt of people not talking to other people”. She exclaims: “No one is ever charged with negligence or failing to provide the necessities of life. These are just the mentally ill. They do not count”. (Readers are invited to read Marilyn’s blog which appeared earlier in this space).

Susan Inman, author and mother of a daughter with schizophrenia, suggested the following questions for future surveys in the hopes that the answers would support the need for systemic changes:

  • Would improved public mental illness literacy campaigns have helped you better manage your family members emerging severe mental illness? Would these kinds of campaigns help you now in interactions with a wide variety of people?
  • To what degree were various clinicians helpful when you reached out for help?
  • Were some interactions with professionals more harmful than helpful – if so, in what ways?
  • What kinds of gaps in services do you see?
  • Did your family member have adequate psycho-education about their illness? If not, did this lack of information impact their ability to accept, adjust to and learn to better manage their illness?
  • Did your family member receive any messages within the delivery of mental health services that undermined their belief in the value of medically based treatments? What were these messages and how were they delivered?
  • Do you know that the current national curriculum on training peer support workers doesn’t include any information about disorders like schizophrenia?
  • Do you think that knowledge about this disorder would help peer workers provide better help?
  • Did you know that the current training emphasizes that people must also choose if they want any treatment in order to “recover”?
  • Do you think that differently trained peer workers could help people come to a better understanding of involuntary treatment they may have received?
  • Discuss your experience with peer workers.
  • How helpful were any system-supplied family support workers with whom you had contact?
  • Have you been concerned about the trend to combine programs and supported living for people with just a severe mental illness with those who are struggling with a concurrent disorder?
  • Have you been in contact with service providers who didn’t seem to have an adequate knowledge base about schizophrenia?
  • Did your service providers educate you or your family member about common cognitive losses associated with schizophrenia?

Susan also mentions the important evidence supporting the use of trained family care givers who deliver psycho-education to families in the NAMI created Family to Family programs in reducing relapses and in improving families well-being.

Family caregivers need to take part in research design to really capture the reality of the world that we live in. If we were to be involved in creating questions that would reflect the gaps in the system, then it may help bring around much needed changes that would really help our loved ones with serious mental Illnesses. It would be wonderful if Academia could make use of our expertise. If they did, we would have a mental health system that would be more efficient in helping our family members.

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