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\ the: man hehe started FOS has reason to be involved By KATHY YAN OJR Staff Writer — Three years ago, Bill Jefferies retired early from his 25 years as a teacher at Oakville- High School, mainly to devote all his time to the problem of schizophrenia. He's had almost a lifetime associa- tion With the illness, watching while two older brothers suffered its tor- ment (when treatment meant in- ’stitutionalization) and re-living the anguish and heartbreak when his son, now 34, fell victim to schizophrenia 12 years ago. Mr. . Jefferies had all the reasons he needed to become involved. “I knew I had to do something because of my own family situation,’ explains the soft-spoken Mr. Jefferies in an interview in his Cumnock Crescent home. ‘I had to -contribute something, to struggle against it and not just sit back.”’ When his son took ill, Mr. Jefferies says he and his wife were caught in the same position of ~~ cfttitin,; helplessness and anger in which many families find themselves after the illness has been diagnosed in someone they <i “When you are dealing with an . illness that that is incurable, you are more vulnerable to claims of _ Success. Many people were educated with the idea that the illness comes from pressure in the family, the way ~sthe family has set up the home en- vironment. It didn’t seem to make’ sense but then you couldn’t dismiss it either. Then they talked about diet. We'd try anything, blindly.” Although he did have three years 6f medical school before he entered - teaching, Mr.-Jefferies says: ‘I was j nterested intellectually in knowing more about the illness.’’ _ His intense interest¢@vhich found him researching and closely follow- ing medical updates, and his willingness to help others in = same position, prompted th tablishment of.the Oakville c ee of the Friends-of Schizophrenics. Gathering with family friends, one* of whom’ is currently president of the Oakville chapter, and with sup- port from Dr. Erhardt Busse, chief of psychiatry at Oakville-Trafalgar MemoriaP Hospital, Tony McLean, hospital community co-ordinator and Canon Ian Dingwall of St. Jude’s AnglicaniChurch, the chapter held its first meeting two-and-a-half years ago. In two-and-a-half years, this one small chapter, that attracted 60 peo- ple to its first meeting, has expand- ed into 11 chapters throughout On- Dedicated: Bill Jefferies, founder of the Oakville chapter of Friends of Schizophrenics, has committed himself to helping the families of schizophrenic victims and educating the public about the disease. He has two * . brothers and a son wko suffer from it. OJR/Tom Barley Mental Health Act ‘ts flexible: Changes to the Mental Health Act in 1978 were made to improve and clarify mental health care in On- tario, according to Gilbert Sharpe, a “lawyer with the ministry of health. The Oakville chapter of Friends of Schizophrenics is currently prepar- ing a report listing criticisms of the revised act. “About the mid-70s, it was becom- ing apparent there were some fairly serious problems with the 1967 Men- tal Health Act. Doctors were mis- interpreting the act so the ministry set out to establish with some precision, some clear parameters.” The changes in legislation, however, were not brought about by lobbying of civil liberties groups which Mr. Sharp says is a mis- conception, but from within the through work done in - government-run mental hospitals. “The government didn't give into pressure from any group,”’ Mr. Sharpe says. With respect to committing a Correction In a story ca schizophrenia published in Wednesday's OJR, a sentence read, in “The act makes it more difficult to admit a patient and, cee. it on prohibit his civil rights . ite tt eg Pe Pada Se lawyer patient under the old act, a patient could be committed “in the in- terests of his own safety, or the safe- ty of others.” Under the new legislation, the provisions for commitment are more stringent. — To criticism about the stringent provisions of committal in the new act that some say prohibit patients who should be committed from be- ing placed in hospital, Mr. Sharpe replies: ‘Physicians aren't always aware of the degree of flexibility that is there.”’ Studies have shown that the com- mitment rate is the same under new provisions as it was under old, says Mr. Sharpe. Although he would agree there are some good aspects about the MHA, Dr. William McCormick, director of | education for the Queen Street Men- tal Health Centre, has recently sent a paper to the Canadian Medical Journal outlining some examples of _ patients from his own community practise that should have been com- mitted but under present legislation, couidn't be He says the current legislation is coming up for review and the On- tario Council of Health has already sent in a series of recommendations for OPE But he says Sake, in- '¢ «4 -9-t 89 + 8st 9 & bee ba ee ©. 2-84 ee tario, and in Calgary and Edmonton. Shortly after the start of the Oakville chapter, that lured people from Burlington, Hamilton, Mississauga and Toronto, various communities opened chapters which were eventually incorporated into the Ontario Friends. of Schizophrenics. In 1979, the Cana- dian Friends of Schi ics was started. Mr. Jefferies is president of both the provincial and national ex- ecutives. Much of his life today is devoted to fighting schizophrenia and spreading knowledge of the illness to various communities. He attends conferences in Canada and the United States, speaks to parent- groups and hospitals throughout On- tario and keeps up-to-date on world- wide medical progress. He is an encyclopedia of informa- tion on schizophrenia, dominating the conversation with facts and statistics. One in 100 people are afflicted with the illness; schizophrenia most frequently strikes people in their teens and ear- ly 20s; more hospital beds are oc-’ cupied by schizophrenics than by patients of any other medical condi- tion and in Oakville alone, there were five schizophrenic-related suicides in the past. two-and-a-half years. Although his organization has many objectives, including speaking for the rights of schizophrenics and * raising funds for research, education of the community is a constant goal. “I think it’s important that the schools keep up with the times. There have been great Second of two parts developments in the field of schizophrenia. ,My brothers never came out of hospital. The only thing they could do for them was to sedate them heavily. This was before the discovery of these drugs. I bet if you asked people on the street if there was an association for the mentally retarded in Oakville, they'd know; but if you asked them if the same type of organization existed for schizophrenics, they wouldn’t know.” 2 In an effort to reach more people about FOS’s existence, Mr. me drops off FOS pamphlets in the hospital’s psychiatry ‘department waiting room. Because of confiden- tiality provisions in the Mental Health Act, names of schizophrenic victims cannot be released and this is one way of letting people know _ there is a group of people for - families to turn to. It was with this same devotion and selflessness that founded the FOS that Mr. Jefferies said he would now like to sée a corps of professionals and office staff take over from him, not because he is tired of the travell- ing or the constant rehashing of the illness, but because he wants to see the organization become more ef- : ucla and effective. ee) eh ' From beginnings in church hall _ group has spread far and wide Two-and-a-half years ago 60 peo- ple gathered in a hall of St. Jude’s Anglican Church to talk about Schizophrenia. From that small gathering of relatives of schizophrenics, the group has expanded to approx- imately 50 families with a total of more than 300 on a. mailing list. Membership isn’t pushed and those on the mailing list, including social workers and members of the medical profession, get access to any information discussed at meetings and notice of any upcom- ing meetings. They meet oncesa month at St. Jude’s and meetings can take the form of an informal get-together for families to vent their frustrations or anger with others who share their anguish; a panel discussion with invited professionals and experts; a guest speaker or a film nightwhere films pertaining to the illness are viewed and discussed. Its goals are not only to bring together families in order that they may share their similar problems, but to assist patients in rehabilita- tion by helping to provide post- hospital housing and more employ- ment opportunities; promote recreational activities, promote and help fund research programs’ and educate the public. The group provides a sense of mutual support, one family bound together to ease problems suffered by the schizophrenic and his family, and fight against this illness. “Such a group promotes a relationship between families with the illness. They also feel they have input into how the illness is being dcaitt with,” says Bil Jefferies, the group’s founder. Often, half the battle is getting people to admit to someone out- side the family that the illness ex- ists, making it difficult for them to ee ee “Unfortunately there are many people who still don’t want it known that a family member has schizophrenia. They don’t want the brothers and sisters to kndW, they don’t want the grandparents’ to know and they don’t even want the patient to know. But it’s like diabetes which is a chemical problem in the pancreas; schizophrenia is a chemical problem in the brain. The only way to educate people properly is to recognize the disease.” The chapter: works in - partnership with the medical profession; Dr. Erhardt Busse, chief of psychiatry at Oakville- Trafalgar Memorial Hospital, sits on the executive. Not only can the group use the knowledge and advice of the professional medical experts, but in one specific case, their access to the medical field helped in the release of a report disputing one doctor’s unproven theory on the drug penicillin and its relationship to schizophrenia that caused un- necessary concern for patients who cling to every new theory proposed by doctors. - Currently, the group is voicing its disapproval to some provisions of the Mental Health Act, revised in 1978, through a report. documenting members’ own ex- periences and their recommen” dations for changes. At a recent meeting of the FOS, - members criticized the act for its stringent committal provisions * where often a patient who should be committed cannot be. “I would like to see it written into the act that families in con- junction with the medical profes- medical profession and family have not been given the power to arrange for treatment,’’ Mr. Jefferies says. Among its other objectives, FOS would like to see a sheltered business in Oakville for schizophrenic patients that would . hot only provide employment for si0h an Worn together wiluvui —~ recourse to law in order for a person tg have treatment. Justice is not only in our courts; it is in our life more than in our courts. Many cases are going untreated er are — ce? Fe PF Ce ee ee Oe ee we ee ee ‘teeeeevevrereeee post-hospital patients but serve the community as well. Employment could consist of a photocopier service for ‘businesses; performing odd jobs for working couples such as laundry services, or picking fruit to assist Ontario fruit farmers who often have to employ people from qutside the country. The group is also anxious, and has something of a commitment from the provincial government, to establish better post-hospital facilities for patients. “I don’t know what it is, the nature of it but it is a program of more tive post-hospital care and involvement $f the hospital in the post-hospital life of the patient,”’ says Mr. Jefferies. Educating the public is of the ut- most importance. ‘We want families and patients themselves to know we are fighting and can master this ill- ness. A cure might be just around the corner. That kind of education we have to get.across to families and patients. We are dealing with a very vital part of human life. If we get a breakthrough here, we can do a tremendous job of developing mental health and more effective treatments of the mind and other brain problems?” The FOS logo sums up the phiiosopny of ine group — ihe hands clasped in friendship and working together to fight the illness and the surrounding globe which represents the fact that schizophrenia is.not just a local illness, but is world-wide. tt? + e+ Cet esi eee eee eee +5 J