Roberto MezzinaDirettore, DSM AAS 1 Trieste

Head, WHO CC for Research and Training

Overview of the Mental Health Action Plan 2013 -2020

Vision

• “A world in which mental health is valued, promoted, and protected, mental disorders are prevented and persons affected by these disorders are able to exercise the full range of human rights and to access high-quality, culturally appropriate health and social care in a timely way to promote recovery, all in order to attain the highest possible level of health and participate fully in society and at work free from stigmatization and discrimination”.

WHO Action Plan 2013-2020:Cross-cutting principles and

approaches

2. Human rights: Mental health strategies, actions and interventions for treatment, prevention and promotion must be compliantwith the Convention on the Rights of Personswith Disabilities and other international and regional human rights instruments.

Human rights perspective• 07 In the light of widespread human rights violations and

discrimination experienced by people with mentaldisorders, a human rights perspective is essential in responding to the global burden of mental disorders.

• The action plan emphasizes the need for services, policies, legislation, plans, strategies and programmes to protect, promote and respect the rights of persons with mentaldisorders in line with the International Covenant on Civiland Political Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention on the Rights of Persons with Disabilities, the Convention on the Rights of the Child and other relevant international and regional human rights instruments.

The 3 “e”s(Thornicroft and Tansella, better mental healh

care 2009)• Ethical bases, scientific evidences and

experiences are the three fundamentalaspects of treatment (in hierachical order)

• What are the fundamental guiding principlesof services? - International level egConventions on Rights (ICESCR which includesMH); national (Laws and policies; local (forservice development) and individual.

Principles of laws• Participation• Effectiveness• Choice and acceptability of treatments• No discrimination• Access• Security / safety• Autonomy and empowerment• Family involvement• Dignity• The least restrictive• Advocacy• Capacity

Local: • Comprehensiveness• Equity• Accountability• Coordination• Efficiency

Ethical based approach• An (any) approach based that is rights- and ethics-based

can be effective and generate evidences? • And if so, to what extent and why? An hypothesis could be

that the combination of the 3 “e’s” (ethics, evidence and experience) is key.

• But, again, why? (Human, basic) rights refer to a wholeperson so on shared basic values of humanity.

• To be a whole system is also important. If we share a world who is readable as a product of an inter-subjectivity, exchange etc alienation is reduced and there is no room forthe parallel world that psychiatry constructed around the illness.

• The therapy of reality that Rotelli expressed years ago.

Episteme

• Epistemiology should be based on a person-centred paradigm valuing the personal and social experience of individuals as citizens, and not on a paradigm of disease.

• The person in the social context - Whole life (in all domains), whole systems, whole community

• Innovation in the field of deinstitutionalisation, social integration of individuals and integration ofservices into a coherent network that is able torespond to citizens’ needs should be studied and supported critically.

Convergent meaning• The meaning of our therapeutics overlaps with the

meaning that individuals attribute to their condition, and thus there shoud be a common ackowledgementof that meaning.

• The phenomenology of the encounter: is based on shared meaning, as opposed to the fracture ofmeaning - that is madness.

• An “overlapping consensus” (Rawls) is based on common experience. The search of shared meaning isbased on rights advocacy, on equality (Sen).

• A whole life vision is connnected to the response toneeds.

Paradigm Shift in Psychiatry: Processes and Outcomes

• The passage from psychiatry to mental health can be seen as a movement from total institutions to organizations of human services, featured by programs, provided by resources, based on relations, which define the pathways of the “demand” for mental health as a “circuit”.

The paradigm shift

• The paradigm shift that is taking place, even if in aconfused fashion, is the passage from the biological-medical model for treating illness to the model of aresponse to needs, including the subjective ones, ofthe persons who are in a state of suffering, helpingthem in their journey of recovery and ofemancipation.

• The challenge will be to adopt practices that arealternative to total institutions, socially andindividually more acceptable, and which guarantee atrue ‘social reproduction’ of the individual.

Critical Paradigm• The issue of paradigms was again revived strongly in the recent

international reflection (Bracken, Thomas, Timimi et al. 2012; Priebe, Burns, Craig, 2013; Mezzina, 2005; 2012a).

• The reductionist neurobiological, "technological", paradigm which is connected to the medicalization of daily life and to the various forms of "biopower" (see Foucault), has re-proposed invariances as founding principles of the scientific knowledge within a framework exclusively centered on the positivist vision of the sciences of nature, without taking due account of the crisis of scientific models inspired by the knowledge of complexity (as in the works of Von Forster, Prigogyne, Morin).

• The wider definition of bio-psycho-socio-cultural approach seems to line up these different fields, but while recognizing the interaction, it does not return a meaning to us, in any case.

Critical Paradigm• In recognition of a substantial stall the progress of knowledge and

research in psychiatry over the past thirty years, even in the academia some are starting to re-propose the centrality of a mental health studied in the social world, which is the one where the individual manifests him or herself (Priebe, Burns, Craig, 2013).

• When we look for treatments by symptom and syndrome targets, and not by individuals and subjectivities, the person - and his/her life in full - is still far from appearing at the horizon of a knowledge that is capable of challenging the Illuminist outcomes of Western thought.

• In all this, recovery has spread light on • the variety of ways in which people cope with the problems of mental

health, • the wide range of supports beyond those coded as therapeutic, • the non-specificity of help factors and the recognition of a knowledge of

experience that is in conflict, through users’ movements and organizations, with professional knowledge, intended as aimed at bringing health and mental illness issues back to the human dimension.

• Hence, the need to consider the importance of values and social relations, but also healthcare policies and the ethical bases of treating and caring (Bracken, Thomas, Timimi et al., 2012).

Illness and institutions

• A revolutionary break occurred with deinstitutionalization, which produced a rupture, and a radical change in both epistemological and practical terms.

Basaglia• In the concept of “epoché”, he would discuss the

relationship with the illness, speaking of the implicationof the observer’s presence in the area being observed,but also with the overall context (framework,institutional conditioning, semiological horizon).

• “Psychiatry’s current task might be that of refusing toseek a solution for mental illness as illness, and insteadapproach this specific kind of ill person as a problemwhich – only to the degree to which it is present in ourreality – might represent one of the contradictory aspectswhich will require conceiving and inventing new forms ofresearch and new therapeutic structures”. (F. Basaglia,op. cit.)

Ethics• Human, fundamental rights refer to a whole

person, and particularly shared basic values ofhumanity in an intersubjective care relationship.

• Nonetheless, as Habermas maintained, a necessary shift is from ethics to enforceablerights.

• The UNCRPD, as well as the WHO QualityRightsprogramme that descends from it, are nowpromising a great change in the entitlement ofrights for people with mh problems, but there is a gap with the reality of psychiatry everywhere in the world.

LIBERTA’• Essere, vivere, mettere rimettere in l. • Avere, godere, privare della l. • Conquistare, mantenere, perdere la libertà, rivendicare la l.,

costituirsi in libertà, dare, togliere, distruggere, violare la l. • L’autonomia che l’uomo rivendica per sé• Responsabilità, imputabilità dell’agire umano• Libertà personale, religiosa, morale, sessuale• D’opinione, di parola, d’azione, di voto• Di commercio, di scambio, di lavoro• Diritti di libertà / indipendenza dell’attività individuale da

costrizioni esterne• Essere libero da vincoli, freni e impedimenti

Libertàlibertà da:• Bisogno• violenza• dipendenze e poteri • oppressione

la malattia come non libertà

libertà per: • emancipazione dalla miseria nella - , della malattia • comunicare e condividere il mondo della vita• cambiare il mondo e i rapporti tra gli umani

Libertà da

• Liberazione, affrancamento - da fame, dolore, bisogno (freedom from want, Roosevelt 1941), libertà dalla paura.

• Libera facoltà di decidere.• Libertà (leggi morali) e necessità (della natura)

sec Kant

Freedom istherapeutic

UGO GUARINO

The WHO QualityRights project to assess and improve quality and human rights

in mental health and social care facilities

Mental Health Policy and Service Development, WHO, Geneva

Act, Unite and Empower for Mental Health

Quality Rights ASSESSMENT THEMES

1. The Right to an Adequate Standard of Living (Article 28 of the CRPD)

2. The Right to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health (Article 25 of the CRPD)

3. The Right to Exercise Legal Capacity and to Personal Liberty and the Security of Person (Articles 12 and 14 of the CRPD)

4. Freedom from Torture or Cruel, Inhuman or Degrading Treatment or Punishment and from Exploitation, Violence and Abuse (Articles 15 and 16 of the CRPD)

5. The Right to Live Independently and Be Included in the Community (Article 19 of the CRPD)

Objectives of the QR project• Improve the quality of inpatient and outpatient services and

human rights of people with psychosocial disabilities

• Build capacity among service users, families and health professionals to understand and promote human rights and recovery

• Develop civil society movement of people with psychosocial disabilities to provide mutual support, conduct advocacy and influence policy-making processes in line with international human rights standards

• Reform national policies and legislation in line with best practice and international human rights standards.

The UNCRPD promotes a social model of disability.

• Disability is seen as the result of the interaction between people living with impairments and an environment that has many physical, attitudinal, communication and social barriers

• Disability can be overcome by changing the physical, attitudinal, communication and social environment (barriers) to enable people to fully participate in society

For the medical model, disability’ is a health condition and people with disabilities are thought to be different to 'what is normal‘. A person with disability needs to be fixed or cured.

Equality and non-discrimination

The CRPD includes an agreement that countries will not permit discrimination against people with psychosocial disabilities.

“Discrimination is the practice of unfairly treating a person or group of people based on prejudice toward their certain characteristics.”

CRPD

The general principles that guide the Convention are inspired by the UDHR• People are free to make their own choices• No one will be discriminated against• People with psychosocial disabilities have the same

rights to be included in society as anybody else• People with psychosocial disabilities are to be

respected for who they are• People with psychosocial disabilities should have equal

access and opportunities as everyone else

Equal recognition before the law

• The CRPD is very clear that people with disabilities should be treated equally by the law. People with disabilities must have equal access to legal representation as well.

• Article 12 also says that people with psychosocial disabilities should have the right to make decisions and choices for themselves

Access to Justice

• The CRPD explains that when people with disabilities require the law to intervene for them they must have fair and equal access to lawyers & the courts.

• In the past there have been occasions when lawyers refuse to represent people with psychosocial disabilities or they have been treated unfairly by the courts.

Liberty and security of the person

• People with disabilities must be free & safe

• They should not be locked up just because they have a perceived disability or because of a misconception that they are dangerous.

• They should have the same rights as everyone else and be protected by governments and international law.

Freedom form torture or cruel, inhuman or degrading treatment or punishment

This means not being tortured or treated cruelly

• People with disabilities must not be treated cruelly or tortured

• People with disabilities must not be experimented on, including through medical experiments, (unless they freely agree).

• Countries must do everything possible to make sure these things do not happen.

Living independently and being included in the community

•People with disabilities should be able to make the same decisions about where they live just like everyone else & they should be part of their communities

•Countries should make sure that people with disabilities can live all aspects of life as independently as possible

•People with psychosocial disabilities must access the full range of supports and services to enable them to lead independent lives in the community

Freedom of Expression

• People with disabilities should have the right to say what they want and there is a special responsibility to provide information to people with disabilities in a way that they can access and understand

• Governments must also take measures to ensure that people with disabilities have their voices listened to

Privacy

• People with disabilities are just like everyone else in that they have the right to a private life

• Any information about their lives that governments hold should also be kept private

Home & Family

• This is often one of the most difficult aspects of life for a person with physical or psychosocial disabilities.

• People with disabilities face stereotypes and discrimination that prevent them from leading normal family & sexual lives.

• The CRPD says people with disabilities should enjoy the same right to have a family and personal relationships as everyone else

Education

• This right to education is often denied to people with psychosocial disabilities

• People with disabilities must have the same opportunities to develop their skills as everyone else

• They should have the opportunity to go to mainstream schools and have their learning and educational needs met in those schools

Health• People with disabilities have the right to access health

services on an equal basis with everyone else, and get the same standard of service as others

• People with disabilities should get the health services they need because of their disability

• Health professionals must ask people with disabilities for their informed consent to treatment

• Services must be close to where people live to make it easier for them to access and make them more effective

Habilitation/rehabilitation

• Countries must make sure people with disabilities can lead an independent and healthy a life as possible and must provide services and supports in health, work, education and social services to help that happen.

• These services and supports need to be as near to where people with disabilities live as possible

• People with disabilities should also have access to peer support services

Standard of living and social protection

• People with disabilities should have an equal right to the same standard of living and social protection as everyone else.

• People with disabilities should have access to housing

• The CRPD details the provision of support that people with psychosocial disabilities should have.

Legal capacity and decision making:

• Article 12 also protects the right of people with disabilities to exercise their legal capacity – that is, to make decisions for themselves.

• It is extremely damaging to not let people make the important decisions in their lives.

• In addition, consistently taking away people’s right to make even small decisions on a daily basis can be profoundly disempowering.

• Traditional models including substitute decision making and guardianship where other people (e.g.. health care workers, family members) make decisions for people with psychosocial disabilities.

• The CRPD says this is wrong and should be replaced with a supported decision making model

• Supported decision making may also involve enabling people with psychosocial disabilities to nominate a person who can communicate the person’s wishes and preferences when they are unable to do so

• Support in decision making is something that all of us use at times to make decisions

• Mental Capacity can fluctuate - a person may need different levels of support at different times

• But legal capacity (the right to stay at the centre of decision making, with or without support) never fluctuates

• Supported decision making allows people to retain their right to legal capacity and also provides the support required to Respect / Protect & Fulfil this right.

Supported decision making

How can legal capacity be promoted?

• Treatment and recovery plans that are led by the people with psychosocial disabilities

• Informed consent

• Supported decision making

• Advance planning

What supports recovery?

Why Abuse Occurs in Mental Health Facilities

• Staff believing that violence, coercion or abuse is justified or necessary to control a person with psychosocial disabilities

• Insufficient training of staff on alternative methods for diffusing violent and challenging situations

• Lack of supervision of staff

• Policies in facilities supporting or not punishing these practices

• Culture of violence, coercion and abuse in facilities

• Not enough staff to responsibly manage tense, difficult or violent situations

• Staff believing that sometimes practices such as using seclusion and restraints are inevitable

• Power dynamics

Why Abuse Occurs in Mental Health Facilities

• Violence, coercion and abuse are never justified, even in extreme circumstances

• Seclusion and restraints are not intervention of last resort

• Alternatives should always be sought by staff in order to protect the wellbeing of people with psychosocial disabilities and others around them

Sometimes it seems impossible to find alternatives to abuse, so seclusion and restraints are used in the facilities:

• The use of seclusion and restraints is always a treatment failure

• There are no exceptions to this rule

Key Strategies to effectively manage tense situations

– Sensory Approaches– Comfort Rooms– Individualised Plans– Communication Techniques– Crisis response teams

Abuse is criminal• Many practices of violence, coercion and

abuse are criminal

• When these practices are criminal they cannot be something that can be dealt with internally and it will require the police and courts.– Eg. violence such as physical abuse and rape are a

criminal offence and should never be dealt with only internally.

• Criminal legislation within the country must also be applied within mental health services

Committee on the Rights of Persons with Disabilities

• Guidelines on article 14 of the Convention on the Rights of Persons with Disabilities

• The right to liberty and security of persons with disabilities

• Adopted during the Committee’s 14th session, held in September 2015

III. The absolute prohibition of detention on the basis of impairment

• including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.

• States parties should refrain from the practice of denying legal capacity of persons with disabilities and detaining them in institutions against their will, either without the free and informed consent of the persons concerned or with the consent of a substitute decision-maker.

• Enjoyment of the right to liberty and security of the person is central to the implementation of article 19 on the right to live independently and be included in the community. This Committee has stressed this relationship with article 19. It has expressed its concern about the institutionalization of persons with disabilities and the lack of support services in the community, and it has recommended implementing support services and effective deinstitutionalization strategies in consultation with organizations of persons with disabilities. In addition, it has called for the allocation of more financial resources to ensure sufficient community-based services.

IV. Involuntary or non-consensual commitment in mental health institutions

• Involuntary commitment of persons with disabilities on health care grounds contradicts the absolute ban on deprivation of liberty on the basis of impairments

V. Non-consensual treatment during deprivation of liberty

• the provision of health services, including mental health services, are based on free and informed consent of the person concerned

• States parties have an obligation not to permit substitute decision-makers to provide consent on behalf of persons with disabilities. All health and medical personnel should ensure appropriate consultation that directly engages the person with disabilities.

VI. Protection of persons with disabilities deprived of their liberty from violence, abuse and ill-

treatment

• The Committee has called on States parties to protect the security and personal integrity of persons with disabilities who are deprived of their liberty, including by eliminating the use of forced treatment, seclusion and various methods of restraint in medical facilities, including physical, chemical and mechanic restrains.

• The Committee has found that these practices are not consistent with the prohibition of torture and other cruel, inhumane or degrading treatment or punishment against persons with disabilities pursuant to article 15 of the Convention.

VII. Deprivation of liberty on the basis of perceived dangerousness of persons with disabilities, alleged

need for care or treatment, or any other reasons

• Persons with disabilities are frequently denied equal protection under these laws by being diverted to a separate track of law, including through mental health laws. These laws and procedures commonly have a lower standardwhen it comes to human rights protection, particularly the right to due process and fair trial

VIII. Detention of persons unfit to stand trial in criminal justice systems and/or incapable of criminal

liability

• The Committee has recommended that “all persons with disabilities who have been accused of crimes and… detained in jails and institutions, without trial, are allowed to defend themselves against criminal charges, and are provided with required support and accommodation to facilitate their effective participation”, as well as procedural accommodations to ensure fair trial and due process.

XI. Security measures

• This Committee has addressed security measures imposed on persons found not responsible due to “insanity” and incapacity to be held criminally responsible. This Committee has also recommended eliminating security measures, including those which involve forced medical and psychiatric treatment in institutions. It has also expressed concern about security measures that involve indefinite deprivation of liberty and absence of regular guarantees in the criminal justice system.

XIII. Free and informed consent in emergency and crisis situations

• The Committee has also called for States parties to ensure that persons with disabilities are not denied the right to exercise their legal capacity on the basis of a third party’s analysis of their “best interests”, and that when after significant efforts have been made it is impracticable to determine a person’s will and preferences, practices associated with “best interests” determinations should be replaced by the standard of “best interpretation of the will and preferences” of the person

XIV. Access to justice, reparation and redress to persons with disabilities deprived of their liberty in

infringement of article 14.• (d) Individuals who are currently detained in a psychiatric hospital or

similar institution and/or subjected to forced treatment, or who may be so detained or forcibly treated in the future, must be informed about ways in which they can effectively and promptly secure their release including injunctive relief;

• (e) Such relief should consist of an order requiring the facility to release the person immediately and/or to immediately cease any forced treatment, as well as systemic measures such as requiring mental health facilities to unlock their doors and inform persons of their right to leave, and establishing a public authority to provide for access to housing, means of subsistence and other forms of economic and social support in order to facilitate de-institutionalization and the right to live independently and be included in the community. Such assistance programs should not be centred on the provision of mental health services or treatment, but free or affordable community-based services, including alternatives that are free from medical diagnosis and interventions. Access to medications and assistance in withdrawing from medications should be made available for those who so decide;

• (f) Persons with disabilities are provided with compensation, as well as other forms of reparations, in the case of arbitrary or unlawful deprivation of liberty

Critique

Evidence

• Epistemiology should be based on a person-centred paradigm valuing the personal and social experience of individuals as citizens and not on a paradigm of disease.

• Moreover, innovation in the field ofdeinstutionalisation, social integration ofindividuals and integration of services into a coherent network that is able to respond tocitizens’ needs should be studied and supportedcritically.

Research• In compliance with these principles, the network intends to promote, support and perform:• •research studies on the state and development of community services and their degree of

innovation, placing special emphasis on approaches based on ethical decisions and their impact in terms of service responses and change of cultural attitudes towards mental health in the community;

• •research activities based on the evidence emerging from community practice and both individualand collective experience, as opposed to what is traditionally seen as scientific evidence;

• • the epidemiology of today’s institutions, taking stock of the paradigm shift and what is beingdeveloped on this issue both in Italy and worldwide;

• •any form of participatory research that actively involves individuals with an experience of mentalhealth problems in the setting of services as researchers;

• •more generally, research activities that include a multistakeholder/multiplayer perspective and active involvement, encompassing decision-makers, administrations, managers, carers and the community at large;

• •action-research initiatives aimed at institutional change;• •research on recovery and recovery-oriented approaches also focussing on their implications in

terms of service organisation, the use of resources for individuals and their social inclusion and citizenship

• •critical research on the use of drugs and biological treatments, especially in the form of personal accounts and evidence drawn from the real world

• •any research combining qualitative and quantitative approaches.

Experience• The purpose of the meeting is to explore particularly

the issue of liberty and freedom in care processes, asopposed to a vision of restraint and denial ofsubjectivity.

• Which practices can promote freedom?• Can be described an operationalized?• Which are related indicators?• What connects key-words such as open door, open

dialogue, free access, community engagement, co-production with stakeholders, recovery (also of the whole system) on one hand, and the contrast torestraint, coercion in care, special forensic psychiatryinstitutions?

• We need here to widen the chances fo communicationand acknowledge complexity.

Trieste• Trieste is an internationally known experience that started

from the first closure of a psychiatric hospital in Europe (in 1980) as a process of change of thinking, practice and services.

• It includes 24 hrs CMH Centers with few beds each, only a 6 bed unit in GH for a town of 240.000, a high number of social cooperatives and many innovative programmes in the area of recovery and social inclusion.

• It is recognised as a WHO Collaborating Centre and considered as a sustainable model for service development – even in a context of economic crisis - with a clear demonstration of cost-effectiveness.

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Today’s features of the Mental Health Department in Trieste (236,393) are:

Facilities:• 4 Mental Health Centres (equipped with 6/8 beds

each and open around the clock) plus the University Clinic)

• A small Unit in the General Hospital with 6 emergency beds

• A Service for Rehabilitation and Residential Support (5 group-homes with a total of 35 beds, provided by staff at different levels and a Day Centre including training programs and workshops);

Partners:• 15 accredited Social Co-operatives.• Families and users associations, clubs and

recovery homes.Staff: 214 people23 psychiatrists, 7 psychologists, 111 nurses, 10 psychosocial rehabilitation workers, 8 social workers, 27 support operators, 12 administrative staff.

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Where are the ”beds” today?

Year 1971: 1.200 beds in Psychiatric Hospital, closed down in 1980 after a 9-year process of phasing out.

Year 2015: 67 beds of different kind:• 26 community crisis beds available 24

hrs. Mental Health Centres (11 / 100.000 inhabitants)

• 35 places in group-homes (14 / 100.000)

• 6 acute beds in General Hospital (2,5 / 100.000)

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Some relevant outcomes• In 2014, only 19 persons under involuntary

treatments (6,5/ 100.000 inhabitants), the lowest in Italy(national ratio: 19/100.000); 2/3 are done within the 24 hrs. CMHC

• Open doors, no restraint, no ECT in every place including Hospital Unit

• No psychiatric users are homeless

• Every year 200 trainees in Social Coops and open employment, of which 10% became employees

• Social cooperatives employ 400 disadvantaged persons, of which 30% suffered from a psychosis

• 142 “health budget” for individual rehabilitation plans

• The suicide prevention programme lowered suicide ratio 40% in the last 15 years (average measures)

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How much does it cost?

1971: • Psychiatric Hospital 5 billions of

Lire (today: 40 million €)

2014: • Mental Health Department

Network 17,0 millions €• 71,83 € pro capita• 94% of expenditures in community

services, 6% in hospital acute beds

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MHD Costs in 2014

2014 %

Staff € 9.920.000 59%

Medications € 424.055 3%

General expenditures € 2.371.984 14%

Social expenditures € 736.874 4%

Personal Health Budgets € 3.476.939 21%

MHD Budget € 16.929.852 100%

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

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.

No Restraint General Framework• Open Door Choice at all levels of the system• Liberating care relationships• Recognizing dignity and rights of subject• Treating subject as a body, not an object

Community health and development• Non-medical determinants for health – social deprivation and

isolation, hence: • Microarea Habitat Project (global, local, plural) activated in

Trieste in collaboration with the City of Trieste and the Public Housing Agency (Ater), and then expanded to include other Regional areas in the context of the Microwin project.

• 10 areas of te city, with an average population of approx. 1000 persons each, for a total of 15,000 inhabitants.

• Interventions for learning about residents, verifying health conditions, guaranteeing good healthcare and social-healthcare practices, reducing inappropriate hospitalisations or stays in nursing homes, verifying the appropriateness of therapies, diagnostics and analyses, promoting self-help, developing collaboration among services and among other actors, such as volunteer groups and/or stakeholders, promote community cohesion.

• Beginning in 2008, 10 additional microareas promoted by other public/private actors (e.g. Enaip, Itis, Caccia Burlo, Salus Spa etc.).

Trieste: general indications

• Community health as passage which derives from deinstitutionalisation: systems built around individuals/communities

• Comprehensive, holistic approach which combines medicine with welfare systems for powerful synergies - concept of whole systems, whole life approach (Jenkins, Rix, 2002)

• The focus on individuals and the rights of citizenshipraises the issue of values which underpin practices and services (value-based services, Fulford, 2001)

• Creating personalised itineraries as organisational-strategic key, in which the person has an active roleand contractual power.

Indications

• Avoid or reduce transitions in care: fragmentation of services system.

• Foster the service’s responsibility and accountability towards the community. The responsibility for care processes should be rooted in the community.

• Recognising the importance of social contexts as producers of the meaning of health actions and as bearers of resources -refusing automatic choices which are not differentiated based on the contexts where they are applied.

• Passage from reparative medicine to participatory health (no black box as funnel for specialistic approaches).

• Developing the protagonism of individuals as stake- or shareholders in the healthcare system (concept of leadership linked to the activation of processes of strategic/organisational change, in ‘rushes’ or continuous cycles).

Indications• A shift from healthcare institutions to healthcare

organisations is necessary• Also required is a ‘systemic’ vision based on the

person’s life (whole systems, whole life approach) with a low threshold, single access point (one-stop-shop),

• Developing home care, both network and networked, focussed on the person in their actual living context, and thus on their life story and social capital, and not on the illness.

• A system of possible options which diversifies responses, making them flexible and personalised, should therefore be provided for.

• “Freedom is therapeutic” was in the 70s the motto in the Trieste experience, which is stillpreserving that legacy, and now “Freedomfirst” (as a pre-condition for care) can express some of the most significant movementstances, which overturns power mechanismtoward people empowerment.

Service networking with

• Beyond the acknowledgment of the value of the single individuals and the families, the need forthe valorization of families and consumers ascollective subjects gradually becomes imperative as far as they present themselves to the attentionof the service.

• Thus at a some stage in this process, a need forworking out new strategies to open to more collective levels of participation startesemerging.

From hospitalisation to hospitality

• Institutional rules• Institutionalised Time• Institutionalised (ritualised)

relations:among workers / and with usersTime of crisis disconnected from

ordinary lifeStay insideA stronger patients' roleMinimum network’s inputs

• Agreed / flexible rules• Mediated time according to

user’s needs• Relations tend to break rituals• Continuity of care

before/during/after the crisis• Inside only for shelter /respite• Maximum co-presence of SN

From hospitalisation to hospitality

Difficult to avoid:Locked doors

• Isolation rooms• Restraint• ViolenceIllness /symptoms /body-

brain

• Open Door System

• Crisis / life events / experience / problems

Human development or “THE PERMANENT WORKSHOP FOR CITIZENSHIP”

• SOCIAL-CULTURAL REHABILITATION FOR COMMUNITYACCESS 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.

Trieste demonstration• A town without a psychiatric hospital for 30 years.• From total institution to a fully community based service, without barriers,

immersed in the community, and a low threshold of access.• Practice with the highest degree of freedom, following the principle of

respecting user’s power of negotiation.• There are places, like the CMHC, group homes, day centres, socila clubs,

where anybody can live health and ill mental health in their interface inpeople’s lives.

• Mental health issues are recognized in their intersections with mental illhealth and social inclusion (with welfare systems), with justice, with generalhealth and health needs.

• The paradigm of illness is broken in favor of that of the person.• It is possible to open an issue of diverse stakeholders and collective subjects

(users, families, networks, community, society) and of their power, while thevertiical power of psychiatric institution has been dismantled.

The issue of factors extrinsic to the individual

• The question of the significance of social factors immediately arises. These have often been described as "determinants" by the epidemiological-statistical term (Marmot, 2005).

• Basaglia wrote: "Recoverability has a price, often very high, and is therefore an economic and social rather than a technical and scientific fact" (Basaglia, 1969, p. 76).

• This does not happen if basic needs are not met: "We cannot understand what disease as long as the primary needs of men are not met" (Basaglia, 1975, p. 369).

• Even outside the realm of mere survival, material resources and tools for inclusion are obviously necessary, but not sufficient in themselves in the path towards autonomy and improvement of the most objective components of the quality of life (Borg, Sells , Toporet al., 2005).

• Money, a home, a job are essential vehicles for recovery, because they represent opportunities for the reconstruction of one’s identity and social bargaining capacity. "He who does not have, is not" – recalled Basaglia.

Social factors and subjectivity• However, the question of the subjectification of social factors arises

immediately afterwards, of how they affect a subjectivity that is recovering, that is to say, how extrinsic factors relate to intrinsic factors, although the theories of recovery divide them in somehow mechanistic manners sometimes (Jacobson, Greenley, 2001).

• In defining how social factors prove subjectively useful one must, on one hand, work around the probabilistic-statistical construct of "determinants" and, on the other hand, bypass the sociological and controversial construct of need.

• The recovery process should find answers to needs, but – as Basaglia recalls – these needs are always mediated by the social organization. People do not express their needs, but that which they introject as a need (Basaglia, 1980, p. 482).

• This, however, contains the contradiction between the individual and the constructed nature of the need, and its political and collective dimension.

Citizenship rights• Similarly, a post-reform stage was necessary, a

reformulation of the theme of the needs and the response to them, as it was laid out by Basaglia, in terms of citizenship rights (Dahrendorf, 1989).

• The conceptual frameworks most frequently used in guidance documents on the topic of recovery (Le Boutiller, Leamy, Bird et al. 2011) include, as a background, exactly the promotion of citizenship, intended as support the reintegration of people in the society as citizens – i.e. rights, inclusion, employment – but not separated from a change in the services, globally (“whole system change”).

• This is why it is important to grasp the link between alternative psychiatry criticism practices and the new leadership, empowerment, the entrance of the users of the services as collective subjects, on the policy scene.

Recovery and emancipation• Even in official documents (World Health Organization, 2010b),

empowerment is depicted as a multidimensional social process that determines changes in the lives of individuals and in the circumstances of their health.

• That is why we prefer mentioning recovery and "emancipation", because we want to emphasize the aspect of non-freedom that is related to the disease condition as personal and social misery, to the loss of rights or prevention of the access to socially usable resources, and therefore to the effort that must be made to "reassemble".

• Today all this remains confined within the specific field of psychiatry and within the research for sectorial rights, although it represents one of the different forms of social exclusion, something still experienced by individuals who belong to an "oppressed minority" (Rotelli, 1992, p. 94).

• For this reason, society, starting from its dimension of community, must be mobilized and crossed with transformation with a strategy that includes a two-way movement, a dialectical movement (Davidson, Mezzina, Rowe et al., 2010).

Recovery: conclusions• Recovery is an interpersonal and social issue, whereas

extrinsic social factors (determinants) are personalised in a re-discovered subjectivity, while health and illness are captured in a dialectic interplay at the level of daily life experience – in a movement of reclaiming a life back.

• The passage from needs to citizenship rights, the social dimension of recovery, the empowerment issue, are mediated by the role of community based services ascatalysts of resources and opportunities for individuals.

• Deinstitutionalizing therapeutic relationships meansbreaking roles and rules, creating reciprocity and shiftingpower toward a real encounter, that is basically a recognition of the contractuality of the user.

• It is not only about discovering a meaning in personal human suffering, but it is a two-way transformation ofboth poles – the observer and the observed, the caregiverand the recipient, the service and the community.

The role of the Services

• risk, openness, involvement, accessibility andflexibility, the possibility of choosing, access toopportunities

• How independent are “recovery” processes fromprofessional help?

• What are the natural support systems for recovery? What are the personal and social factors which encourage and aid it?

The role of the Services

• accessible and able to offer something (affordable). • mediation in order to activate forms of help and

bring the network closer.• The network “appears” thanks to the

presence/function of the Mental Health Centre(MHC) as a pole of attraction.

• the moment of recognition/responsibility• Going beyond the institutional relationship, which

involves the opposition of “subjectivity” to“institution”.

Barriers: can a service be empowering

• If it uses seclusion and compulsion as meansto regulate behaviors?

• If it is reconfirming the gap in power thatusers had?

• If it is driven by a paternalistic attitude?• If it does not provide access to opportunities

and resources (‘clinical’ vs ‘comprehensive’ or ‘integrated’)?

Basic issues related to the system and the practice

• To what extent empowerment is conditioned or limitedby:

• The possibility of using detention and compulsion – the legislation

• The presence of locked units• The lack of a clear open-dor policy• The lack of low-threshold, easy and friendly access to

services• The lack of rights e.g social rights• The lack of a discourse based on negotiation within

trusting therapeutic relationships

Co-production

• ‘Co-production’, a term coined in the USA by 2009 Nobel Prize foreconomy Elinor Ostrom (Ostrom & Baugh, 1973; Parks et al.,1981), means:

• delivering public services in an equal and reciprocal relationship betweenprofessionals, people using services, their families and their neighbours(where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change” - Boyle and Harris, 2009);

• recognising people as assets, promoting reciprocity, giving and receiving(trust between people and mutual respect) and building social networks, because people’s physical and mental well-being;

• depends on enduring relationships (Boyle and Harris, 2009).

Trieste and the IMHCN• The assembly model (Gorizia) - Have a say, a voice• Whole life Learning sets – starting from the personal

experience and then working together to define aims(IMHCN)

• Twinning: Whole life whole system whole community• Coops in the co-production – PHC Bts• Coops inside (from) the CMHCs – social inclusion workers

for the diffused day care - Associations of citizens – theyalso represent stakeholders

• From training families to AGORAs (mobile assemblyapproach in the various services for coproduction – the wider mh Dept of services) produced a 20 point charter

• Whole life whole system whole community• From training families to AGORAs (mobile assembly

approach in the various services for coproduction – the wider mh Dept of services) produced a 20 point charter.

Development of coproduction ofservices

• PH Budgets for co-planning and also delivery (social coops B). Coops in the co-production.

• Recovery services: the prospect of recovery changed a lot – a framework and a direction for involvement, alsorecovery of carers

• 12 point Recovery charter developed by users and in the real services

• Recovery houses and crisis homes• Recovery families• Sponsor families• Open Dialogue

Terms of reference

• TOR 1 - Assist WHO in guiding countries in deinstitutionalisation and development of integrated and comprehensive Community Mental Health services.

• TOR 2 - Contribute to WHO work on person centred care through applying Whole Systems & Recovery approaches: innovative practices in community Mental Health.

• TOR 3 - Support WHO in strengthening Human Resources for Mental Health.

To support WHO in promoting mental healthreform processes with focus on

deinstitutionalization

• (1) Technical support in countries as agreed with WHO, particularly in South/East Europe for deinstitutionalization and development of integrated and comprehensive Community Mental Health services.

• (2) Promoting intersectoral and integrated approaches and related technologies for governance in low, medium (Czech Republic) and also for high income countries (e.g. Australia and New Zealand, Japan, the Netherlands, the UK), to support social inclusion.

• In collaboration with GOs, NGOs, community organisations and welfare and general health services incl. Primary Care.

To support the development of reformprocesses in South America through Latin

American networks

• The activity is aimed at providing support to the implementation of Reform Law of 2010 in Argentina, through WHO, by enhancing a network of good practicies and offer training in Trieste to young professionals;

• in Brazil the shift from institutions to community services will be promoted through training (twinning conventions with Universities).

• Other countries can be involved in agreement with WHO.

Collaboration with WHO QualityRightsProgramme (implementation of WHO programmes and activities at

country level)

• To support human right issues and developments in institutions together with NGOs – collaboration with WHO QualityRights in identified countries such as Malaysia and India.

• Deliverables: (1) A project to implement a no restraint approach in Johor Bahru (Malaysia) and related report.

• (2) A project for implementing WHO QualityRights toolkit in India (Chennay) and related report

• WHO deliverable - Contribution to implementation of the Global Mental Health Action Plan. Programme Budget outputs 2.2.1 and 2.2.2.

D.I. Today• Il Manicomio era ed è un modello semplice ed attrattivo, medicale,

assistenziale e concettualmente riduzionista: che gestisce le contraddizioni tra cura e custodia al suo interno e lascia fuori quelle sociali, la vita delle persone e la loro riproduzione.

• Ubiquitario: Coloniale nei paesi in via di sviluppo. Non si tocca finché non ci sono alternative sec Innovations in DI.

• Blocco socialista: Istituti sociali dipendenti dai ministeri del Welfare e del lavoro in tutto il mondo.

• Modelli territoriali e comunitari multi polari dimensionali professionali disciplinari, restano sfocati. Es. diatriba su ACT, FACT, RACT e modelli funzionali vs globali.

• La DI perde terreno ovunque.• La segregazione trova forme nuove, rapide di controllo e rilascio.

L'OP diventa per acuti ma si moltiplicano i cronicari.• Si sta giocando una grande partita sugli OPG in Italia.

D.I. and Human rights• Diminuiscono i pl nel mondo. Ma la questione

psichiatrica resta fondamentalmente politica e legata ai movimenti di liberazione che restano il presupposto per una vera cura.

• Con ciò si coniuga l'intervento sui sdh, anch'esso di natura politica. In molti paesi ancora l'equivoco umanitario la respinge solo nei confini disciplinari e dell'etica. Si può però ripartire da questi per fare SM.

• La grande speranza dei diritti umani. Who QRs è una metodologia soft che, attraverso la partecipazione della comunità, cerca di entrare nelle istituzioni psichiatriche per cambiarle. La scommessa della UNCRPD é rischiosa ? Un percorso.

The map of reformsPossible national reforms: • The Netherlands• Poland• Belgium• Czech R?• Denmark?Possibile regressions:• Brazil?• France?• Norway?• Sweden?Pilot experiences:• Serbia• Japan• Malaysia• India

Polarization

• Between rights and practices there is a polarization.• This meeting puts the opposite in connection: restraint

and freedom practices.

• We can think of gestures, small actions, incrementalchanges

BUT it si needed• A whole system change / a change of the thinking

(recovery – whole life learning)

WHO CC for Research and Training in MH Trieste - Azienda per l’Assitenza Sanitaria n.1 “Triestina

”Franca and Franco Basaglia International School” Trieste, 15-18 DECEMBER 2015 –

A COMMUNITY WITHOUT SECLUSION- the challenege of open door, open discourse, open access in mh

care and services

who.cc@aas1.sanita.fvg.itwww.triestesalutementale.it