Sunday, December 21, 2014

Letters

Lifelong Treatment

Schizophrenia patients lack proper follow up care

Submitted by Myrtle Macdonald, Chwk

 

riends who care about mentally ill people: I heard Dr. Gulzar Chimma on the CBC radio before 8 AM Thursday, Dec 19th. He is a former Minister of State for Mental Health in BC. I am glad that he is involved again. He said that when Riverview patients were transferred in the early 90s to rural communities, that the results were good for three years.

 

That is not true. I remember well. These services, called Closer to Home, were never properly funded in towns and rural areas. Continuity of care was never adequate. Far from it.

 

Even yet few places have adequate follow up and families are still largely excluded from discharge planning. Although usually above average in intelligence, persons with schizophrenia receive little or no support to find and hold full time or part time jobs. Job sharing is helpful. They receive little support to get an education. 

 

As they recover, they learn to behave better with professionals than they do in their daily lives, and reports of erratic behavior by family members, tend to be discounted.

 

When they seem stabilized, they are discharged to General Practitioners who have little or no knowledge of mental illness. At the same time they no longer have a case manager, which is double-deprivation. There should be follow-up for the rest of their lives. Team treatment is valuable and essential.

 

Many intelligent people with schizophrenia never succeeded in a job and in middle age feel frustrated angry failures.  Their 70-90 year old parents have not yet had the satisfaction of rehabilitation.  The word "recovery" is not a sensible word because the degree of improvement is small. It also tempts some to stop taking their medications when they feel better.  When they do, there is no one to bring them back into treatment except their aging parent(s) or siblings.

 

I am thankful that we have a BCSS family support person, Francesca Arueyuingho in Fraser East.  Without her, many families would be in great distress. Some still are.

 

Staffing could be made available for Assertive Care programs, home visitors and education and job support, if the CEO and the vice presidents were paid much less. There is no need for them to get as much as they do. Salaries over $200,000 or even double that, plus bonuses and travel, do not ensure a quality Mental Illness program. Staff need to get out from behind their desks.

 

Mental illness and mental health are not on the same continuum.  Many people with schizophrenia have both mental illness and mental ill-health. They need treatment for both. 

 

My brother is one of the few, who for many years, has had good mental health.  He is not a loner and he is one of the few who has insight to take his medications.

 

Many people with schizophrenia are actually schizoaffective and need ongoing treatment for both Bipolar and schizophrenia.

 

I am 93 and have a long history of experience. Sadly, many people write me off as outdated and of no relevance. Remember I was a professional doing a pioneer community follow-up program out of Douglas hospital, Montreal in 1971-74. Have you ever read my research report? It is more up to date that current practice. Out of a client load of over 200, only 6 had to be readmitted and that was before we had Respiradol and Olazopine. These medications are superior and more have been developed.

 

Communication between hospital staff and the Mental Health Centres is not adequate. There should be seamless continuity of care. Family should never be excluded, but they still are, although there has been some improvement.

 

The Ministry of Children and Families care, and give quite good outpatient care for patients until they are 18, and in a few cases longer. The inpatient services are far away. There are many who fall between the cracks when they as adults are transferred to adult services. Why? Because the staff, systems and protocol are by strangers and different. Child and adult mentally ill people should all be in-treated in the same ministry and adjoining locations.

 

There should be better communication between Prisons/Jail staff, Mental Health Centre staff and family. Often prisoners are discharged without a mutually developed treatment plan.

 

Please take these comments seriously because soon I will no longer be able to warn and advise you all.  I don't want my knowledge to be wasted.


The plan of 26 transfers and 14 new for 1915. This is a beginning but far from adequate. There are many homeless people who need treatment for mental illnesses and housing. The same is true of many prisoners in provincial jails and federal prisons.

While living on Riverview grounds they can gradually learn social skills and semi-independent and independent living skills. Some could graduate into living in the community provided they continue to receive assertive care. They should have follow-up the rest of their lives.

Supported placement in part time jobs and job sharing can bring dignity and a sense of enablement and accomplishment into their character, often for the first time. Most job training so far has not been of a high enough standard to match their intelligence and dreams, which repeatedly failed.
 

Editor's Note: I forwarded a link to Myrtle about Rainier School. This is a government-run facility that functions as a community for developmentally disabled. Like Riverview, but somewhat more comprehensive in it's scope. Below is her response.

 

That website of Rainier school is very interesting. We also have some good programs in BC for people with developmental disabilities (formerly called mental retardation).

However most people with schizophrenia are highly intelligent. Some are geniuses. Efforts to rehabilitate them often assume they have below average intelligence.

They need help to learn social skills because they became psychotic in their teens and as a result stop fitting into youth culture. They become loners. Some become suspicious of friends, family and teachers. Untreated many become paranoid. With appropriate medications and group therapy they overcome such fears, hallucinations and delusions and they do have a few friends, but not enough. The professionals should see it as their duty/privilege to help the patient build a good relationship with family members. Instead some still swallow the patientís paranoid ideas about their family.

Many people with schizophrenia miss out on the joy of being and aunt/uncle or cousin. Years ago my cousins invited me to weddings and special events but didnít bother inviting my brother. I asked them to invite him. They did and as a result, he relates well and is accepted. My grandchildren love their uncle Walter and he sends them his drawings and phones them. He is liked in his church. Churches need more midweek events where sharing occurs as participators not just spectators.

Another symptom of schizophrenia is loss of ability to organize and plan ahead realistically, an executive disability, a cognitive deficit. Few professionals have skill and motivation enough to understand and work to overcome this weakness.

I have some middle aged friends who have schizophrenia and who have overcome the hallucinations and delusions, but they are terribly frustrated and angry because of their wasted life. Some have a university degree but have not had a career or even employment experience. Others had their first psychotic breakdown while at university. I knew a doctor whose career was ruined by inadequately treated schizophrenia.

The major reason for inadequate treatment is human rights legislation. This allows people with schizophrenia to refuse treatment.
 

 

About the Myrtle Macdonald

She is has a M.Sc. Applied (in Nursing Research and Education), McGill University.

 

She is a retired registered nurse living in Chilliwack and now working with the local chapter of the BC Schizophrenia Association. Myrtle was a street nurse for many years in places like India and Montreal. She turned 93 in June and is one of the Voice's most popular contributors.

 

 

 

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