Caring for a family member with a serious mental illness (mainly schizophrenia and bipolar disorder) is often extremely stressful for families; it impacts them financially, emotionally, socially and physically.
Hoping to improve the situations for the tens of thousands of families in this situation, a group of 45 B.C. families sent suggestions to the Mental Health Commission of Canada with the hope that the Commission would adopt them and help support families. Their suggestions were sent via e-mail and were widely distributed.
The Commission had previously stated they wanted to hear from stakeholders. But, Susan Inman, a Vancouver teacher, writer and parent said in an e-mail to me, "We didn't feel very reassured" that they are listening. "We are still hoping that Ms. Bradley will respond to our suggestions."
Ms. Inman is the unofficial group spokesperson and Louise Bradley is chair and CEO of the commission.
The commission defines itself as "a catalyst for transformative change" with the goal to, among other things, "improve services and support." The organization arose from the report Out of the Shadows at Last -- Transforming Mental Health, Mental Illness and Addiction Services in Canada in 2006. It received federal funding in 2007.
Ms. Inman further stated in her e-mail:
"I don't think that family caregivers for people with psychotic disorders are feeling hopeful when we see the limited agenda promoted by the Family Caregivers Advisory Committee (FCAC) on the Mental Health Commission of Canada's website. The group pointed out that the only research project the FCAC listed, a family mutual assistance strategy, has already been well researched in BC.
The group also pointed out that, by selecting this as their one project, the FCAC is communicating that "the message that what is most important is for caregivers to just learn how to take better care of each other. Meeting the needs of family caregivers involves much more careful examination of many systemic issues."
One suggestion is to research the quantity and nature of family care-giving for people with serious mental illnesses and to estimate the value of the unpaid family labour in terms of decreasing health care costs. The group also believes that the Commission should advocate to raise the standards of programs training mental health professionals to include science based approaches to understanding severe mental illnesses. Many professionals are not knowledgeable about advances in brain research and often still believe that families cause these mental illnesses. Inadequately trained mental health professionals aren't equipped to refer to early intervention programs -- a new best practice being implemented across the country. The group would like to see more collaboration between families and professionals.
One area of growing scientific understanding is of anosognosia -- the neurologically based inability of someone who is ill to understand that they are ill. Research shows that 40 to 50 per cent of people in the grip of a psychosis suffer this and it often results in treatment refusal.
Family caregivers wish to see the Commission recognize this problem and to recognize the need, at times, for involuntary treatment. Many have ill relatives who look to their families to ensure that they are not left untreated and allowed to deteriorate in case of a relapse. Families need help to gain access to legal means to be able to fulfil this responsibility.
Parents often still continue to experience the destructive impact of unjustified blame for these disorders -- a holdover from the non-research based and unscientific theories that dominated psychiatry and psychology in the past. These parents would like to see the Commission openly acknowledge and address this.
Finally, the language in Commission documents suggests that severe and persistent mental illnesses, like other mental health concerns, may be caused by adverse social circumstances. The Commission should openly support a science based understanding of these neurobiological disorders. As well, it should actively promote the brain based research that can lead to better treatments and, ultimately, cures. Currently, on the Commission's Science Advisory Committee site, there are no proposals for encouraging ongoing scientific investigation of any kind of mental illness.
The group has yet to hear from Ms. Bradley They did receive a response from Ella Amir, Chair, Family Caregivers Advisory Committee (FCAC). She stated in her e-mail reply to the group, "One of the projects the FCAC has proposed focuses on the same concerns you describe... if approved, this proposed project will address yours (and our) concerns," Since Ms. Amir didn't describe any of the proposed projects, Ms. Inman didn't feel reassured that the FCAC is moving in the right direction.
Ms Amir did add that she was sure that Ms Bradley would also reply. When contacted, Kyle Marr, a spokesperson for the Commission, said he understood their concerns about not having any reply yet but "due to the depth of the email and the issues that it addressed, careful consideration is required".