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LAY AND PROFESSIONAL APPROACHES TO PEOPLE EXPERIENCING MENTAL ILLNESS IN CIS COUNTRIES Prof. Shula Ramon Anglia Ruskin University, Cambridge 26th October 2007 Paper presented as part of a CEELBAS study day on: Mental health and intellectual disability in Post-Socialist Eastern European: From Institutionalisation to Integration? University College London • Historical background • • • • • Like Western Europe, the Soviet block built up in the 2nd half of the 19th century a system of institutions in which to treat, control, and hide from the view of ordinary people all of those perceived as deviant, children as well as adults. This was intensified during the 20th century, based on the assumption that the bigger the institution is the better. • • • However, while in the West doubts about the usefulness of the institutions have emerged forcefully from the middle of the 20th century, eventually leading to some efforts at deinstitutionalisation, this is yet to happen in the CIS countries. • • • We need therefore to revisit both the main reasons for having institutions in the first place and the reasons for closing them down to map the beliefs location of the CIS countries. • The current situation • Before we do so, we need to be aware of the increase in psychiatric morbidity and suicide in all of the CIS countries (Jenkins, Klien, Parker, 2005), due to: • Impact of regime and socioeconomic change • Breakdown of old support systems • Greater social inequality • Ease of consuming drugs and alcohol (not only Vodka is available..) • Impact of political conflict in the region: refugees and internally displaced people (e.g. Azerbaijan, Georgia, Armenia, Russia, Chechnia) • Historical Reasons given for putting and keeping people in institutions • *they need special attention; • *being on their own, with "their own kind" is better for them; • *the institution provides a safe place and thus defends them from the outside world; • *they may be dangerous for the rest of us; if they are on their own the danger will be contained; • *it is upsetting to see them; it is therefore better not to have to see them on a daily basis. • *they will be re-educated in the special setting. Evidence on institutional living • 1.life in the institutions was highly regimented: everyone had to do the same at the same time. • 2.people had no choice, even with the most basic things, such as what to eat, dress, when to get up and when to go to sleep, with whom to be. • 3.lack of respect marked institutional life: not only did not people have the right to choose, but they had to obey the staff on everything; it was taken for granted that the staff knew better what was good for the residents. Those who disobeyed were punished either by the withdrawal of the few extras that you could get for good behaviour, or by being beaten up, left to stay in seclusion. • 4.you had no opportunity to mix with any ordinary person, or pursue any ordinary activities. • 5.evidence of abuse by staff and by other residents in institutions (Stanley, Manthorpe and Penhale, 1999) • 6.the totality of institutional life (Goffman, 1961) • 7.Institutions with a “human face” do not overcome the problems outlined above • 8.The specificity of mental illness: longitudinal research on recovery which highlights around 5060% of recovery, as against the traditional view that only 30% recovered (Warner, 1985, Harding, 1987, Harrison, 2001) and as against the focus on chronicity • Achievements of Deinstitutionalisation • 95% of all children with physical, mental and psychological difficulties do not enter institutions in countries such as Britain, Denmark, Finland, Italy, Norway and Sweden. • 85% of resettled long stay patients from British psychiatric hospitals evaluated their lives in the community as much more satisfying than their life in the hospital; • Most of them showed improvement in self care and social skills, but no change has occurred in relations to their symptoms • Very few of them (less than 5%) required a re-admission • Less than 1% became homeless or committed an offence • None committed homicide • Users as Experts in Experience: evidence of cultural shift • The problems with deinstitutionalisation in Western Europe • Lack of belief in its viability; • Lack of appropriate services • Lack of training for staff • Insufficient investment in public awareness raising work • Lack of sufficient funding • The lure of mini institutionalisation • Congregation in poor areas and the risk of victmisation • Use of failures of the new system for media sensationalism • We need now to attempt to understand why the doubts about institutional life have not had the same significance in the CIS countries, before and after the demise of Communism, as they had in Western Europe. The perceptions of lay people and their politicians: • Betting on the strong • Disregard for the weak • Pity without respect • Fear of being infected • The high level of stigma of any disability, but especially of mental illness • Invalidity status for life and its implications for recovery • Implications of these beliefs re investment in • deinstitutionalisation, community mental health services, welfare • benefits, a valued social role, adequate professional training Issues for Professionals • A rigid and dictatorial diagnostic system in the Soviet Union era • Use of psychiatry for political purposes – container of social control – possible in a police state, but also a reflection of lay people’s fear of mental illness • Lack of a tradition of autonomous thinking and professional behaviour, with a few notable exceptions (e.g. Dr. S. Gluzman) • Lack of lobbying activity beyond traditional trade union issues • The inclusion of people with alcohol problems together with those experiencing mental illness • Loss of in-service training with the demise of the old regime The Service system • Institutions for life, with even less opportunities today for any useful activity or programme for residents than was the case under the old regime • Outpatient clinics which offer only appointments • No rehabilitation services • No primary care or secondary care community mental health services • No preventative work What has changed in the CIS countries? • Less money for institutions forces a degree of rethinking • Professionals who had the courage to begin to think differently, yet without full rethinking (e.g. the Ukrainian Independent Psychiatric Association; the refurbishment of a department in a psychiatric hospital in Baku by the staff and with their own money) • Professionals who have bothered to learn new ways of working: the move to counselling and psychotherapy and its significance • Professional protest against lack of learning opportunities (Warsaw) • Relatives from well to do families who have been influenced by the West (private school of autistic children in Kiev, the Moscow Steiner school) • International NGOs: activities and dilemmas (OSI, Hamlet Trust, HealthProm) • Local NGOs : activities and dilemmas (Tblisi day centre, the Steiner School in Moscow) Ways forward: • Massive and long awareness raising among professionals, ordinary people, celebrities, politicians, the oligarchs • Introduction to the Strengths approach (Saleeby, 1992), • Introduction to the Recovery model (Romme and Escher, 1993, Roberts and Wolfson, 2004, Wallcraft, 2005, Ramon et al, 2007) • Turning existing hospitals to largely self-managed communities in the first phase (see the Italian psychiatric reform: e.g. Henry, 1990) • Let those who cannot live outside of the institution (due physical and mental difficulties) live in group homes on the grounds of hospitals , as in Trieste. • Enable those who can live in the community – the majority of residents in current CIS institutions – to move gradually to live in the community in group homes, with structured activities, including income generating ones, which enable social inclusion. • Prevent new admissions through the use of crisis intervention teams and short stay asylum facilities in the community, early intervention teams • Work with users and carers as partners • Begin with pilots • Learn from both Western European successes and failures: • Nip mini-institutionalisation in the bud • Be ready for a long haul: remember that it takes ten years to close fully an institution!