I wrote an earlier blog about “Suggestions to improve the Family Caregiver Experience on Councils” https://mailchi.mp/d7c071fef63e/fundraiseront-mental-health-act-advocacyfrozen-odsp-rates-4859714 which came about from my experience as a Family Caregiver sitting on the Service Coordination Council on Mental Health and Addictions of the Central Ontario Local Health Integration Network (LHIN) between 2016 to 2019. I had replaced a colleague who was killed by his undertreated son with schizophrenia. Unfortunately, this tragedy and its implications were never discussed at the Council, even though I brought it up with the Co-lead CEO many times.
In that earlier blog, I wrote a rather sanitized version of my experience at the Service Coordination Council and attempted to put a positive spin on it, hoping that my message would reach the decision makers. But the reality of sitting on that Council was much more brutal. In fact at the last meeting on March 14/2019, the Co-lead from the LHIN did approach me and the other independent family caregiver and conceded that our experience “had been rough”. And although I and the other family caregiver did attempt continually to bring our concerns to the Central LHIN and later the Patient Experience Department of St. Michael’s Hospital, I am writing this with the hope that it will inspire some entity of accountability so that a safer environment can be provided for family caregivers who are asked to give the family perspective on councils and committees. This is especially important now with the development of Ontario Health Teams. Here are some issues that need to be addressed:
Bullying and Intimidation
Twice I was summoned to the office of the CEO who co-facilitated the Council. I had no idea why I was called the first time but during the meeting, I was given a presentation (later presented at the next Council meeting) about how the work of the Council would lead to the development of recommendations. I felt that it was a little condescending. I had brought along a friend who was a retired school administrator and mother of a daughter with bipolar disorder, who finally out of frustration asked if the CEO had a loved one in her family with a serious mental illness. Her response was vague.
The second time I was summoned to discuss the ‘tone and tenor’ of the meetings as I had complained that it seemed that no one was listening. I refused to go. Somehow, I had been accused of a “conflict of interest” which is ironic considering that the Co-lead organization was charged with the responsibility of running the Council which included me and another family caregiver whose loved ones had received services from her organization. Was there not a conflict of interest in this situation? How comfortable were we family caregivers in bringing issues forth with this reality? At a later Council meeting, I was given a lecture by the Co-lead from the LHIN about how I needed to defer to the leaders and (I suppose) return to my token position of being a family representative. I and the other independent family caregiver then lost our transportation allowances. We had to fight to get them back. We were told “as a courtesy” that a re-imbursement was arranged for us, but in the future, we had to apply to be re-compensated.
Unequal access to putting items on the agenda
I had requested at some point that we come together as group and decide what needed to go on the agenda. This came about because the Council really had not come together as a group and I thought we needed to look at areas we had in common. This suggestion actually mirrored one of the recommendations of the excellent Interim Report which had been conducted by St. Michael’s Hospital. But as soon as I mentioned this, I was shot down by the Co-lead from the LHIN who said condescendingly that everyone was welcome to put items on the agenda. Personally, I would have liked to have discussed using a “family model of care” which appeared to work successfully with the grassroots organization, Home on the Hill, of which I was a member.
In the family model of care, the whole family is the client because when one person has a serious mental illness the whole family is affected. This is particularly helpful if the ill person has “anosognosia” which is a symptom where the client is unaware that they have an illness and therefore will not recognize that he/she needs help. In such cases, the family does need support and information in order to support the ill relative. At Home on the Hill, the adult children of the families we support have been successfully engaged in a respectful manner and participate in our programs. As a result, their risk for re-hospitalization or homelessness has been lessened.
One time, I asked for an item to be put on the agenda three weeks before the next meeting and was told that I needed to give them more time! When it came for the opportunity to have a family caregiver speak before the Council, the other family caregiver who had prepared her presentation and was about to speak, was suddenly interrupted. Her presentation was bumped for a ‘feel good’ movie about depression without explanation! On another occasion, we had arranged that another family caregiver give a presentation but then we were informed that her presentation had also been bumped for a speaker suggested by one of the CEO’s. We also noted that the consumer survivor agency at the Council appeared to have no trouble having their people present and it did not appear that they had to give much notice either.
Different perspectives of people with lived experience
Home on the Hill, which we represent, is a family driven volunteer initiative built to address the gaps in the mental health system such as supportive housing and appropriate support services. Our Robert Veltheer Lecture Series addresses one of the biggest gaps which is lack of information about serious mental illness. We attract well known psychiatrists and other mental health professionals to give lectures. We believe that the more knowledge there is about mental illness, the less stigma there is. We are concerned that the medical component of severe mental illnesses is not emphasized enough. We do not have enough psychiatrists or hospital beds so our loved ones can stay long enough to get well, and we do not have adequate supportive housing.
The consumer survivor organization. who also had representation on the Council, operate from a different perspective and is funded by the Ministry of Health and Long Term Care. They state:
“We believe that people will and do recover from mental health extremes, and can lead fully self-determining and actualized lives with or despite mental health labels.” They “respect self-determination and autonomy without conditions” which could refer to life saving involuntary treatment. And they ask that we “expect recovery and wellness, and do not believe inherently on lifelong disability or illness”.
I’m sure governments love to hear this as it means that they really do not have to recognize the severity of serious mental illness, as families experience it and, therefore, they do not need to pay for appropriate treatment and supports.
In contrast, the families of Home on the Hill know that people do not necessarily “recover” and our loved ones can end up in homeless shelters, streets or prison and we keep advocating for proper treatment and support service to prevent this from happening. We pay taxes yet many of our loved ones do not receive services, and we have had to build our own organization to meet the unmet needs. Many of our loved ones are not able to speak for themselves because of the severity of their illness, leaving families to advocate for them.
This difference in perspectives needed to be fully addressed at the beginning because it caused unpleasantness. Even the leaders at the Council were confused as one of them asked towards the end of the three years, if we were “duplicating service”!
Anosognosia and the need for mental health literacy
The term “anosognosia’ means lack of insight which can cause the person to believe that they do not have an illness and therefore will not ask for help. The system insists that service be given on a voluntary basis, yet appear to have no concern for those that are unable to ask for help and become homeless. I had wanted to introduce the concept of using a family model to address this reality, where the family who is supporting the ill individual gets support and information. The resistance to accepting the reality of “anosognosia” resulted in a comical episode where the Co-lead from the LHIN stated that the College of Physicians and Surgeons of Ontario (CPSO), a regulatory body only, would have to determine that “anosognosia’ was a symptom of mental illness!
This is not CPSO’s mandate and the leaders only had to look at the medical literature to learn that anosognosia does exist and that it has a negative effect on providing treatment to patients.
I also had used this term in conversation during one meeting, and as I was leaving, I overheard one of the CEO’s mentioning the term in a tone of “derision”. It was during the same meeting, that I had been given my lecture on deferring to the “leaders”. I felt so uncomfortable that I did not go to the next meeting. That particular CEO now holds a position of power in a local Ontario Health Team. This fact does not inspire confidence. In fact, one of the complaints of families is the lack of knowledge of serious mental illness that exists among many service providers.
The need for standards in how meetings are conducted
Many of us have attended meetings in various capacities in the past and are familiar with Roberts Rules of Order. Meetings at the Service Coordination Council were not conducted in this way. If minutes of past meetings were available, they were not voted upon and accepted by the Council. This lack of structure added to our unease and as one member said the “meetings were run in a shoddy manner’.
The most egregious occurrence happened around the way the Interim Report on the functioning of the Council, written by St. Michael’s Hospital, was handled. The completed Report was dated August 2017, but for some inexplicable reason was presented to us at a September 20th meeting in the form of an edited power point. According to the minutes of that meeting, we were told that “the Interim Report was in draft mode and could not be shared at this time”!
It was a perplexing experience and I carefully checked to see if any of my input had been recognized. I had suggested having a psychiatrist sit on the Council and having more opportunities to hear the family voice. Hard copies of the Interim Report were not dispersed until the final meeting of the Service Coordination Council almost two years later on March 14/2019.
No Final Report was made available!
The question remains, why did we not review this Report and incorporate its valuable recommendations. After all, we taxpayers paid for it. It appeared that this valuable report had been buried for two years, never finalized and the recommendations were never implemented. If they had, our time as family caregivers would have been more worthwhile and perhaps services would have improved for the better.
Tomorrow, see just how governments actually develop a plan.