Whole life whole system in mh , the trieste experience

1. Whole life whole system in mh, the triesteexperience Roberto Mezzina Director WHO CC, MHDept Trieste

2. European policy documents EU Union Green paper (2006) on social inclusion EuropeanPactfor MH and Wellbeing, 2008 • Combatingstigma and social exclusion • Developmentalhealthserviceswhich are wellintegrated in the society, put the individual at the centre and operate in a way whichavoidsstigmatisation and exclusion WHO, 2009 • Psychiatrichospitals(PHs) have a historyofserioushumanrightsviolations, poorclinicaloutcomes, and inadequaterehabilitationprogrammes. Theyalso are costly and consume a disproportionateproportionofmentalhealthexpenditures. • WHO recommendsthatpsychiatrichospitalsbeclosed and replacedbyservices in generalhospitals, community mentalhealthservices, and servicesintegratedintoprimaryhealth care WHO Zero draft– Global ActionPlan. • Reductionof 20% of long termbedswithin 2020. • MH lawsupdatedwithin 2016 in 80% ofcountries. • Alllargeinstitutionswithneglectmustbeclosed.

3. Italy • 100.000 inpatients in 1971 in PHs • 48.000 inpatients in 1978 • All PHs closed in 2000 1978 reformlaw: -no Phs admission, no new PHs -community based care -humanrights focus / involuntary treatment duration reduced (1 week +) – 2 pych. to mayor -No police / justiceinvolved– just healthprotection

4. MentalHealthDepartments • They are rooted in areasofabout 300.000 inhabitants and encompasses a numberofcomponents: • -Smallgeneral hospital acute units (15 beds), 1/10.000 • -Community MentalHealthCenters (up to 12hr, sometimes 24hr) 1/80.000 • -Group-homes2/10.000 with a wide rangeofsupport up to 24hr (17.000 beds in Italy, mostlyNGOs) • -DayCentre (alsowithNGOs)

5. Changing public attitude and family burden • Social acceptanceof the law and a generaldecreaseof stigma attachedtopsychiatrymark a seriesoffundamentalchanges in public attitu­des (DEMOskopea). • Cross-culturalresearchesdemostratethischange in comparsionwithothercountries (Vicenteet al 1995; Roelandtet al, 2007). • Other transnational researches demostrated less family burden in the new community scenario (Fadden et al, 2002). • Itisgenerallyacceptedthat the MentalHospitalsbelongsto the past and cannotbeacceptedany more. Carersassociationsas UNASAM, aswellasprofessionalones (e.g. the Society ofItalianPsychiatrists), formanyyearsclaimforbetter community servicesratherthanfor a newlaw.

6. Deinstitutionalization vs. dehospitalization ‘Dehospitalisation’ is a reduction of the number of beds, while ‘deinstitutionalisation’ in Italy was a complex process resulting in: • a gradual relocation of the economic and human resources from a profoundly modified MH (open wards, open to community) and the subsequent creation of CMH Services; then closing PHs. • a profound change in the living conditions of the former in-patients, giving them a chance of being placed in alternative accommodations, possibly outside the MH.

7. Deinstitutionalization, another way • a critical attitude towards the hierarchical social organisation as an oppressive system even for the staff, which is being replaced by a more flexible organisation. • a transfer to the nursing staff of increased autonomy related to their increased abilities and new skills. • a critical attitude towards the traditional psychiatric treatment, and a profound change in the operative philosophy in order to support the basic needs of the patients.

8. Key lessons from Italy • A clear policy with investments • working directly within total institutions – not a simple adminstrative closure • Total reconversion of staff and resources of PH into community MH Depts (no parallel systems “hospital-community”, no double spending); • creating alternative networks of coherent services that work in synergy within the community, thereby • avoiding useless and often harmful fragmentation and specialisations • Avoiding implementation of general hospital services only instead of comprehenevive community mh centres and services.

9. Lessonsfrom Italy (2) • Coordinationofservices in a given area of the community (MH Department) • A strong community service / Centre (up to 24 hrs) fordelivering care in anintegrated and comprehensive way. Then the components and contentsof care can have a framework (not separate techniques) • Citizen’s input throughparticipation (usres, carers, community) • Health care and generalhealthintegration

11. Toward a value-driven service • Focus on a citizen withrights • Helping the person and nottreatinganillness • Understandeventsof life, overcomecrisis • Explain and discussexperience • Notlosingvalueas a person (invalidation, neglect, violence) • Keep social roles and maintaining social networks / systems • Help social supportnetworks e.g. family • Developgrowthpotential (recovery) • Haveopportunities–realempowerment • Change living conditionsusing material resources (work, money, practical help)

12. ASS n.1 TS • The Healthcare Agency is organised as follows: • 4 Healthcare Districts (each responsible for approx. 60,000 inhabitants), operating according to area (primary care and home care, the elderly, specialised medicine, Rehabilitation, Children and adolescents, Family counselling, District diabetes centre) • 3 Departments (Mental Health, Dependency, Prevention) • 2 Specialised Centres (Cardiovascular and Oncological). • 118 Service for health emergencies • 1215 employees. • Budget: cash balance € 29,327,155.82

13. The MHD and the Local Health Company • The MHD ( Mental Health Department) is part of the Local Health Company ( LHC). • The LHC is the organisation which co-ordinates all public health services in a specific and limited territory. The term “ Company” had been created since 1992 with the aim of underlining some similarities in management style with the private trust. • Specifically, the MHD is the operational structure of LHC which has the following goals : prevention, care and rehabilitation in the field of psychiatry and in the organisation of all interventions aiming to enhance the mental health of the citizens.

14. The Mission of MHD • The MHD shall operate for the elimination of any form of stigmatisation, discrimination and exclusion concerning the mentally ill persons. • The MHD is engaged to actively improve full rights of citizenship for the mentally ill persons. • The MHD shall ensure that the community mental health services of the LHC have a coherent and unique organisation as a whole, through a strict co-ordination of actions and links with the other services of LHC, particularly with general health districts and emphasizing the relationships with the Community and its institutions.

15. Today’sfeatures in Trieste (WHO CC lead for servicedevelopment) are: Services: • 4 Community Mental Health Centres (equipped with 6-8 beds each and open around the clock) incl. the University Clinic • 1 small Unit in the General Hospital with 6 emergency beds; • Service for Rehabilitation and Residential Support (12 group-homes with a total of 60 beds, provided by staff at different levels; • 2 Day Centres including training programs andworkshops; • 13 accredited Social Co-operatives); • Families and users associations, clubs and recovery homes. Staff: • 215 people - 1/1.000 (26 psychiatrists, 9 psychologists, 130 nurses, 10 social workers, 6 psychosocial rehabilitation workers).

16. Criteriaofintervention in Community BasedcomprehensiveServices (Trieste, started 1971, PH closed 1980) • Responsibility • Proactive, mobile service • Accessible service (walk in, no formalreferrals) • Continuityof care • Respondingtocrisis in community / using MH bedsfor people in crisis) • Comprehensive care (social-clinical) • WHOLE LIFE, WHOLE SYSTEM

17. Overarching criteria / principles of community practice in the MH Dept. • Responsibility (accountability) for the mental health of the community = single point of entry and reference, public health perspective • Active presence and mobility towards the demand = low threshold accessibility, proactive and assertive care • Therapeutic continuity = no transitions in care • Responding to crisis in the community = no acute inpatient care in hospital beds • Comprehensiveness = social and clinical care, integrated resources • Team work = multidisciplinarity and creativity in a whole team approach Whole life approach = recovery and citizenship, person at the centre

19. Whole team approach • Fully multidisciplinary working is a central goal, including integration of social care and partnerships in care with other community services and non-professional and volunteer inputs. • The aim is to formulate collective understandings of service users’ situations and shared therapeutic plans. • Frequent on-site multidisciplinary training and other joint activities underpin this comprehensive team working.

20. The 24 hrs Community Mental Health Centre • The 24-hours community mental health centre is a non-hospital residential facility, not conceived just as a crisis centre. • It is in fact multi-purpose, multi-functional: also a day centre, an outpatient service, a base for community teams. • The quality of the environment (home-like) and of the atmosphere (friendly) is based on staff attitudes mainly focused on flexibility and reasonable negotiation with the user’s concerns and needs.

21. Its main duty is to be responsible and try to provide a comprehensive response. • A single multidisciplinary team acts rotating inside and outside, for those who are “guests” on a 24 hours scheme and for the users attending daily or reached at home. • Knowledge and trust are the main tools for building up therapeutic relations. • Users’ participation and contribution in the centre ordinary life is seen as crucial. • Hence crisis is addressed by ‘indirect’ strategies of management using these peculiarities.

22. Pre-requirements • Walk-in • No waiting list • Intake for problems / not for diagnosis • concept of “hospitality / guests”

23. Specialised vs. integrated and holistic models • A systematic comparison of the various aspects of the care process in an integrated and “comprehensive” approach, based in a single location (the MHC), as opposed to a specialised approach (so-called ‘functional’) in the organisation of services, which is instead based on different teams, would be extremely useful. • Implications of deinstitutionalisation in terms of costs and strategy.

24. Community services must be…. • Single access, unified and integrated strategic-organisational moment whose vision must be directed towards the centrality of the user’s needs and desires, with the ‘user’ understood as an active subject • horizontal organisations which are internally open and participatory • Flexible • Responsive to change • NGOs included, for a more democratic and diverse development model in mental health.

25. Do’s and Don’t’s of Psychiatric Crisis Intervention incl. Residential Care Do’s • Being with, staying with, doing together among workers and with users • Negotiate and be accountable for everything • Minimise barriers between operators/users • Do normal things in a normal environment • Involve users in running the Centre (telephones, maintenance of the facilities, cooking, accompaniment and support to others in crisis) Don’t’s • Reduce the compartmentalisation and ’turf’ issues connected with individual locations / facilities (no to roles/spaces) • Don’t separate persons receiving hospitality from other users (‘dissolve’ the crisis in normal, everyday living) • No systems of restraint

26. Some relevant outcomes • In 2010, only 16 personsunderinvoluntarytreatments (7 / 100.000 inhabitants), the lowest in Italy (national ratio: 30 / 100.000); 2 / 3 aredonewithin the 24 hrs. CMHC; • Opendoors, no restraint, no ECT in everyplaceincludinghospitalUnit; • No psychiatricusersarehomeless; • Social cooperativesemploy 600 disadvantagedpersons, of which 30% sufferedfrom a psychosis; • Everyyear 240 trainees in Social Coops and openemployment, of which 20-30 becameemployees; • The suicidepreventionprogrammeloweredsuicideratio 50% in the last 20 years (averagemeasures); • No patients in ForensicHospitals. peppe dell'acqua dsm trieste who collaborating center dsm@ass1.sanita.fvg.it

27. How much does it cost? • 1971: • PsychiatricHospital5 billions of Lire(today: 28 million €) • 2011: • Mental Health Department Network18,0 millions € • 79 € pro capita • 94% of expenditures in communityservices, 6% in hospitalacutebeds peppe dell'acqua dsm trieste who collaborating center dsm@ass1.sanita.fvg.it

28. Social capital and mental health • Social capital refers to relational resources owned by individuals: social networks and interactions, participation and civic commitment, and institutions enhancing cooperation among individuals. • It can be measured by trust, reciprocity and civic participation, and positively correlated with health conditions.

29. The importance of the “social issue” (participation, rights, power, inclusion) and the role of community mental health services in supporting personal changes - functioning as a sort of mediator, an agency for integration. Again, the concept of social capital. • The deinstitutionalization experience in Trieste shows that turning points in recovery experiences often coincide with interventions by the Service, but that this is closely linked to the opportunities offered and the resources activated (e.g. working in coop, social activities, outings, mutual help, sports, joy, a social role, community experiences, sense of belonging , new identities, etc.).

30. Clinical and social • A worldwide trend is the administrativeseparationbetweeninstitutional and clinicalservices, usuallyhospital-centred, and community servicesrunbymunicipalitiesas a part of welfare services. Oftenthey are runbyNGOsusing public finances (seeDenmark, Iceland etc). • In othercountriessuchasSwedenall the “social” componentof care (e.g. housing, job placement, etc) iscompletelydetachedfrom the sphereofactionof Community mentalhealthservices and isrunbylocal welfare. • Thesepolicies create another set ofcomplicationsto the issueoftransitionfrom hospital to community based care at least in termofreconversionofresources, butalso in termofmodelsof care who are sectorised and fragmented in theirpremises.

31. Risk and control • In Italy, following the closing down of asylums, and especially over the last decade, new forms of harm and abandonment have reappeared in hospitals, private clinics and residences for chronic patients, as well as forensic hospitals, but also in community services. • These institutions reproduce, albeit in different forms, the dehumanisation of psychiatric hospitals. • Instead, there has been an increase of institutions for specific forms of reclusion, in a logic of the control of behaviours within psychiatric‐forensic or ‘special’ containers (or prisons tout court), with psychiatry once again providing guarantees through technical‐scientific justifications. • The old notion of danger has been updated to that of ‘risk’, and as such reappears in the new social‐ community, or ‘neo‐clinical’ psychiatry, where the concept of illness remains essentially unchanged.

32. Users and Community PARTICIPATION AND EMPOWERMENT • plurality of the individuals (the emergence of the subjects) • real interactions and alliances promoted by deinstitutionalization • To optimize both exchanges and relationships, within the range of action of the services • the casting of active roles, the activation and the productivity of those values which are used in relationships • participation as a contribution to further modifications of a mental health service

33. WORKERS' EMPOWERMENT IN CMHS • Developing a shared therapeutic culture. • Not only a multi-disciplinary approach but optimization of human resources • overcoming of the rigidities of professional roles • different subjectivities • different points of view • power: decisional spaces and initiatives

34. Rehabilitation in Trieste • Rehabilitation in Trieste is conceived as a program of restitution and (re)construction of full rights (political, civil, social) and citizenship for individuals disabled by mental illness, and the material construction of these rights. This implies: • a) the legal recognition of civil and social rights • b) acquiring resources (houses, jobs, goods, services, relationships) primarily through a • deinstitutionalization process which reconverts total institutions to community services

35. Rehabilitation in Trieste • c) improving access to resources, mainly by • developing user capabilities through • - training (living and vocational skills, education); • - information (psycho-education, social awareness). • The creation of social support networks, which are managed by comprehensive community services totally alternative to the mental hospital, facilitates the delivery of resources.

36. Rehabilitation in Trieste • In order to achieve these goals, it is essential to: • - empower primary consumers; • - provide support for family members; • - re-skill and re-orient professionals; • - provide health education and bring about a cultural change in attitudes, especially in those directly involved in providing services. All these actions must minimize the limitations and social barriers which contribute to produce handicap and stigma, and which reinforce ill behaviour (long-term institutionalization, forensic hospitals).

37. The coops: rules • Democratic and participative structure: every member has a vote in the assembly, that makes any decision and elects the directive committee. • Individual tax exemptions for any employed disadvantagee member. • Overall tax reduction for the coop to 1/4. • Members are paid by normal wages;revenues must be re-invested. • Service staff working either as managers or as mental health specialists; teaching experts and collaborators for each specific sector (members of the "Intelligentsia" open to the enterprise); ordinary members.

38. cleaning and building maintenance (diverse agencies) Canteens and catering, incl. Home service for elderly people Porterage and transport Laundry tailoring Informatic archives for councils, etc furniture and design cafeteria and restaurant services Hotel Front-office amd call-center of public agencies Museums’staff agricultural production and gardening handicraft carpentry photo, video and radio production computer service, publishing trade, CD-Rom serigraphics theatre administrative services Group-homes (type A) Parking The coops: activities

39. Work places of people with work grants

40. National data from work and recovery - PIL • 2007/2010 –Roleof MH services in vocationalrehab and job placement • 80% of MH Depthave Social CooperativestypeBasmainpartners • CMHT havededicated staff for job placementthey do allactions (lesson-the-jobsupport, mainlyprovidedbyexternalpartners). • Train on the job and actingascoordinatorof team is the mainstrategy, whileinividualsupportisofferedby the business partners. People withrelationalskills are required more thanexperts. • Maincriteriaforchoosing a person are a comprehensive care plan (70%) and opportunitiesoffered (40%), thenmotivation (23) and vocationalskills (23). • It’s a wide network intervention • Useofeconomicincentiveslikework-grantsprovidedby the service (47%), municipality (26). Employmentagencies mediate (66%). • Outcomes: QoL (65) , usersatisfaction (59), clinicalImprovement (57). • Tobeemployedis the mainoutcome: 1.448 / 14.403 (10%) • Gender (male), age 35-44, psychosis (49%). • Maindeterminantof job training programmeis the presenceof social coops, maindeterminantofgoodoutcomeiseconomical and localcontext (Regional) • FVG 50 /100.000, Marche 52. Calabria 1,55 /100.00.

41. The women’s group for mutual welcome and support • A women’s group that meets daily and organizes activities and support (since 1997) • An association develops from it • 90 women involved (aged 25 to 70) • Cultural initiatives for women: films, museums, a journey through ethnicity

42. The recovery home • A small recovery house with 3 places for a transitional period of time (last year) • 8 women residents last year (3-6 months) • 20 personalized projects, also with home support • Main aims are emancipation and empowerment • Peer support and real work as service providers within the residence (contract between the association and the MHD).

43. Human development or “THE PERMANENT WORKSHOP FOR CITIZENSHIP” • SOCIAL-CULTURAL REHABILITATION FOR COMMUNITY ACCESS THROUGH EMANCIPATION • defined as the (re)learning and (re)utilisation of tools for decoding and interpreting (reading) reality; • (re)learning and gaining access to strategies of communication; • developing the capacity to care for oneself, and for self awareness and self expression.

44. “THE PERMANENT WORKSHOP FOR CITIZENSHIP” • Specific courses, led not specialists in the area of psychiatry but teachers, artists and specialists in other disciplines. • These course are aimed at strengthening social and cultural abilities, as well as providing user access to individual itineraries of job training and pre-training • Various aspects of social participation, opposing trajectories of desocialisation and exclusion.

45. “THE PERMANENT WORKSHOP FOR CITIZENSHIP” • Themes: • Social and gender identity • the knowledge and discovery of the community in both natural and cultural terms • the acquisition of linguistic and expressive abilities • the use of media.

46. Residences (transitional group –homes) sized according to a “home” model Guaranteeing residents a personalized space and subjective time. Residences are preferably located in town and integrated in the community Residences aim at discharge or the passage to less supported situations. Small residences facilitate personalised therapeutic-rehabilitative projects. Housing

47. Personalised Plan - Personalised Healthcare Budget(PP-PHB) The personalised plan and related healthcare budget is the main tool for affirming the central role of the person and their needs and guaranteeing care continuity. This tool stresses the user’s consent and participation in the plan.

48. Personalised Plan (PP) identifies: needs/goals expected results interconnection of interventions resources required role/duties of professionals and services verification (when & how)

49. Personalised Plan (PP) PP funded by Personalised Healthcare Budget and organised along 3 axes indispensable for full social functioning and empowerment : housing, work, socialisation. The PP accesses other services (mental health services, healthcare districts, social services) and community resources (volunteers, social coops, associations, families), and works as much as possible within the user’s family, physical and social setting. The Healthcare Agency must guarantee the quality of the PP.

50. Personalised Plan - Healthcare Budget • The PP and related PHB shift resources from the structure to the person • Easier to see where resources are invested • Encourage personal living plan by supporting recovery processes • Quality controlof actions through better monitoring of PP’s goals and outcomes.