What Families of Serious Mental Illness Need (and often don’t get)

By Marvin Ross

joanna cheung at panel event.
Joanna Cheung, art therapist giving presentation while Drs Lori Trianno and David Dawson look on.

I decided to write this after the feedback from an event in Richmond Hill, Ontario put on by Home on the Hill, an organization which serves families and loved ones affected by serious mental illness. On May 10, this agency north of Toronto held a luncheon in honour of Mental Health Week. In the words of the president, Kathy Mochnacki, “This event featured a panel consisting of a psychologist, psychiatrist and a social worker/art therapist and the goal was to give families information about schizophrenia and psychotic illness. Our panel was stellar with psychologist, Dr. Lori Triano (president of the Schizophrenia Society of Canada), psychiatrist, Dr. David Dawson and Certified Art Therapist/Social Worker, Joanna Cheung from Markham Stouffville Hospital’s mental health system. Our local MP Majid Jowhari (member of Parliament in Ottawa) was there as were Richmond Hill Councillors, Karen Cilevitz, Godwin Chan, and Tom Muench from our municipal council, the York Regional Police,” and various mental health agencies.

Both David and I have spoken to this organization on a number of occasions and David commented to me after that the families just could not get enough information.

Talking to Kathy after, I was surprised to discover that most if not all the families received nothing like the support my family has received over the years. I thought I would share what I think would be an ideal situation for a family learning that their loved one has schizophrenia, bipolar or some serious mental illness.

When the person is diagnosed and that is usually in a hospital setting, the family should be told in a meeting with the staff who have cared for and diagnosed the person. You should be given information about the condition, an idea of treatments, prognosis, and what to expect down the road. You should also be provided with resources like books, pamphlets, courses and whatever might be of value. We got most of this.

Discharge should involve housing if that is needed and referrals for follow up care to doctors and agencies that will continue with the care and the road back to what may be a new normal. Of course families should be involved with the follow up care. In my family’s case, appointments not only initially involved the psychiatrist but a nurse educator and referral to an excellent program called Family Education and Training.

I am not sure if that still runs but there are considerable resources for families at my local hospital. This is a link to those In addition to a library, there are programs such as family peer support.

Families should always be involved on any ongoing care and treatment unless there are unique circumstances that prevent that. We have almost always been involved and able to talk to doctors or others. There was one time during a crisis where this did not happen and the result almost led to a very disastrous outcome. Fortunately, this was overcome much to everyone’s surprise and relief.

The doctor and the staff whose stupidity caused that problem were all reprimanded by the hospital and I was told that the incident was recorded on their personnel file.

The young psychiatrist who was left to pick up the pieces and put them back as well (along with a young social worker) said that there are better outcomes when families are involved. He also added that he has many patients with no family involvement and that makes recovery far more difficult.

What I have described here are things that those with problems like cancer, diabetes, MS, and on and on mostly already receive now. There is no reason that psychiatric illnesses do not get those too. I can only suggest that all of you make those demands of your health care providers and be as insistent as you have to be. Don’t be afraid to threaten legal action or of notifying the press.  Never worry about what they may think of you but just do all you can to make them do the right thing. What do you care if they may not like you and not want to go have a coffee with you.

While I may be painting my own local hospital in a favourable light, it gets there partly because they get pressure from the community. A few years ago, one of the doctors leaked that there were plans to move a satellite unit servicing an area with limited resources to the main hospital. I wrote about it and others complained and the unit is still there today.

In April this year, three psychiatrists quit the local psychiatric ER and the medical school pulled their residents out. Four days later, the hospital announced major changes. The safety problems were pointed out to the hospital a few years ago but suddenly, they had a solution.

As the result of the overcrowding at the ER, Arthur Gallant was made to sit in the general waiting area, hands cuffed behind his back with a police officer on either side of him, He is suing the hospital for $25,000. I’ve corresponded with Mr Gallant over the years as he used to write a regular blog on mental illness for Huffington Post. Arthur was 1 of 5 Canadians named as a Face of Mental Illness by the Canadian Alliance on Mental Illness and Mental Health which is an initiative of Bell Let’s Talk. Arthur has been featured several times on TVO’s The Agenda with Steve Paikin and in The Toronto Star, CBC’s The National , CTV News Channel, The Globe and Mail, CHCH’s Square Off, and an educational video for the Canadian Mental Health Association (Ontario Chapter).

And I should mention that he was a member of an Ontario Government advisory panel on mental health.

If you want improvements, fight for them!

An Addendum by Kathy Mochnacki MSW RSW of Home on the Hill

I did attempt recently to have coffee with the President of the Board of an organization which appears to be positioning itself as being an example of “evidenced based community treatment” for mental illnesses.  I had hoped to make him aware of the 50%  of people with schizophrenia and the 40% of people with bipolar who have the symptom of “anosognosia” and therefore lack insight and cannot access the voluntary services of his agency.  There needs to be the political will to find innovative ways to help these individuals.

Perhaps there would be fewer  homeless mentally ill people if his agency was a little more flexible.  I was not upset that he did not have coffee with me, but very concerned. as a family caregiver and a taxpayer, that he and his Board are responsible for allocating millions of our tax dollars to his agency’s programs yet he does not appear to be interested in learning about the symptoms of these horrendous illnesses.

I later met with my MP, Majid Jowhari, who has arranged for  Home on the Hill to have input into his mental health platform for the upcoming federal election. We will be asking that there be more awareness of the symptoms of mental illness among mental health service providers and more effective mechanisms of accountability.

This short video (17 minutes) is of the Q and A with answers on how drugs work, dealing with lack of insight and cognitive remediation ( “Video by Billy Dennis”)

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9 thoughts on “What Families of Serious Mental Illness Need (and often don’t get)

  1. I was a psychiatric RN for 17 years. As I see it, the problem is clients are supposed to meet us where we (the “professionals”) are. We need to meet them where THEY are. That means outpatient nurses who have time to take a client out for coffee. That means hospital nurses who can take time to go for a walk on the grounds with a client to talk in a relaxed informal manner — impossible now because in Ontario mental heath nurses spend most of their time putting out fires and feeding the bureaucracy with computer data entries. The system just gets worse because accountants and researchers are calling the shots and front line workers have no consequential input into the system. That’s why change doesn’t happen until the press gets involved, there is a mass rebellion by staff, or families threaten to sue. Fight for change? We all fought the good fight. In the end no one was really listening. Hardball seems to be the only way to play this game.

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    1. I thought about your comment long and hard. It brought back lots of memories of when I was a psychiatric nurse in England in the early sixties . We engaged with our patients. They were much better at scrabble than i ever was. We walked with our patients , talked with them. There were excursions to get them used to being out and about. I am talking about those in hospital who when stabilized would then be outpatients. In my experience it was a time of compassion especially in the place where I trained. Senior nurses wrote short meaningful reports re; progress etc; Nurses spent most of their time with patients and not behind glass.Feed back between the staff was excellent for the most part.

      My hospital was well staffed. It was no picnic, but we were in the main compassionate, We were sent to our breaks not in groups… staggering our breaks so that the patients were not left or separate from staff. Night duty was carefully managed. both for nurses and for patients because there were always some patients that paced at night when they were acutely ill. Nurses enjoyed seeing former inpatients come back for appointments after stabilizing. For the most part family blaming was not so evident. I nursed a few years after major antipsychotics had been introduced and so there were some patients who had suddenly been given something that had restored them to sanity or better functioning . And so some of the older nurses had seen what seemed like miracles. I am not suggesting that everything was fine and dandy, but it was certainly a lot better than what i observe day.

      Now, sad to say those with very serious illness suffer the revolving door or total neglect in the community.I see this on a daily basis . As for families they are often outside the loop . Were they then , I think not so much.

      One patient with bi-polar disorder who was on a Queen’s Park Committee along with me years ago, made a big point around the issue of patient client and consumer. She said that when she was really ill she was a patient , when she was buying services she was a consumer and when she was a client….. I can’t remember her answer to that.

      Apologies for this lengthy piece, but the past was not as bad as it has often been painted. I worked both in private and public hospitals and psychosis was the same in both. Social status , poverty etc:did not change the nature of the illness.

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  2. In the U.S. family involvement bears no resemblance to that described in this blog due to HIPAA laws and widespread interpretation and intents by providers to cover one’s behind and avoid possible lawsuits

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  3. It is likely the case that the reason for poor communication and information sharing is because some professionals are frightened to communicate with families, because of confidentiality entanglement and the possibility of being sued. Among many professionals there is still true ignorance about the biological nature of major mental illness, and family blaming is the easy thing to do. So many professionals and lay people buy into the trauma bandwagon. It easy, and lazy, to make the culprit the family tribe.

    Many professionals say that nurture is an important factor, using the example of “identical” twins to show that it is not just genetics. But, even in this case, from the very first cell division, the identities begins to differ. Their DNAs begin to differ from the outset. Thus, caution must be exercised in the interpretation of differences between twins.

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  4. The “mental health” industry professionals won’t tell families and caregivers the truth about the intersection between neuropsychiatric illness (terminology that won’t roll off their tongues) and criminal justice. They are consumed with proselytizing the mantra that the “mentally ill are more likely to be victims…that the “mentally ill” are rarely violent and when they are, it has little to do with their “mental illness”. These families will not be prepared to face the shock, horror, and emotional pain from of a criminal justice system that does not understand their loved one’s illness. They will not be told the truth about psychosis – neurological detachment from reality which can have catastrophic consequences that will most likely be unjustly criminalized.

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  5. Hi Marvin,

    I read your 22 May post with interest, and watched the 17-minute video of the Q&A at the end of the Home on the Hill meeting. I have just one comment: could the organizers of such mental health-related events PLEASE realize that it’s no longer acceptable to have a panel (regardless of how well-qualified, experienced and empathetic each panelist may be) that does not include a person in recovery from a mental illness.

    Please stop talking ABOUT us; talk WITH us!

    In 2012, when I was working as a public health researcher, the Canadian Institutes of Health Research (CIHR), the federally funded body responsible for funding health research across Canada, introduced their “Strategy for Patient-Oriented Research” (SPOR). This new strategy made it compulsory for every research lead applying for funding to include patient representatives on her/his team from the earliest phases of research planning through to data collection and dissemination of results. CIHR realized that the kinds of research we as health professionals were doing would be radically changed – for the better – with meaningful input from clients/patients throughout.

    Can we have a SPOR equivalent in future mental health events, please?

    Best wishes, Merryl Merryl Hammond, PhD 6 Sunny Acres Baie-D’Urfé, QC, Canada H9X 3B6 Tel: 514-457-4347

    Mad Like Me: Travels in Bipolar Country A memoir merrylhammond.com

    >

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    1. Thank you for your comment Meryl. I can really appreciate the frustration that you must feel. You are right, we needed to include someone with schizophrenia on the panel..

      The results of the survey which we put out following the event had a 100% response to the question about running a similar event in the future. And there were a few asking to hear the voices of those who live with schizophrenia. In fact a number of people with schizophrenia were in the audience.

      For our next event, Home on the Hill has already lined up a speaker who has schizophrenia. She is a valued volunteer of Home on the Hill and is well experienced in presenting to university classes as well as to the general public. We also plan to invite a second speaker who lives with schizophrenia as we are still assembling our panel. According to our survey, families and professionals valued immensely the knowledge they gained from psychologist, Dr. Triano,psychiatrist, Dr. Dawson and Art Therapist Joanna Cheung who composed our May 10 event panel. There was positive feedback about art therapy too.

      Our next event is planned for September 17 (with November 7 being the back up date) and will take place at the Richmond Hill Centre for Performing Arts in the Plaza Suite. We would love to have you attend although I see that you live in Quebec. We will ensure that there will be adequate time for the question and answer session following the presentations.

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  6. My son was diagnosed with sz in 2013 when he had his first break and was involuntarily committed for 30 days. I was informed via telephone from the psychiatrist. There were no preparatory words before he hammered it down and no words of comfort after the blow! I was left to do my own research …. I’m in the United States.

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