1. QualityRights Gujarat Meeting 1 - 3 February 2016, Ahmedabad, India The current status of mental health care in Italy and the improvement of « QualityRights » inSardinia and the Mediterranean area Mauro Giovanni Carta Università di Cagliari, Italia Università di Cagliari, Italia

2. Aims The aims of my presentation are: to illustrate the Italian experience in mental health, the only system that provides care without psychiatric hospitals; to show that Italy lacks evaluation studies and this may encourage an involution; to discuss how we can develop QualityRights in our country and region (Sardinia) and how we are promoting it in the Mediterranean area; to mention some of the consequences and relevant aspects of promoting QualityRights in the whole Mediterranean area in this historic and political framework.

3. Historical Context: the Giolitti law The first national law on psychiatric care, called "Rules and regulations and insane asylums" was enacted in 1904 by the Giolitti government. As a public policy law it emphasized the need to protect society from the "mentally ill", thus transforming "cure" into "custody." The internment in asylums was justified by stating: "We must hospitalize … people with all causes of insanity when they are dangerous to themselves or others or cause public scandal"

4. Mental Health and Positivism The Giolitti law, as other laws in Europe in the late nineteenth century reflected the vision of the positivist era. Without concrete evidence, mental illness was interpreted as an "hereditary defect" in weaker individuals in the Darwinian view of natural selection. The "asylum" is a product of this vision based on a pseudo-scientific argument that reflected the need for control of western societies of the nineteenth century.

5. Asylums Asylums had gates, bars, doors and windows always closed with locks and keys. They were places where the most common "treatment" was segregation in containment beds, cold baths, electroshock and lobotomy.

6. Asylums

7. The roots of the Italian reform The Italian reform had a long preparation period. The reform movement started in the late 1960s, led by the work of Franco Basaglia in a context of "de-institutionalization". This has created an experience of community services and has led to the closing of hospitals even before the reform in some areas (Gorizia, Trieste, Arezzo). In 1968, the first partial reform of the law was approved and ten years later it was approved in general form and included in the national public health system.

8. Is the Italian law "180" a fruit of the Italian cultural climate between the 1950s and 1970s?

9. Law “180” - Changes In this cultural framework the reform process determined the passing of psychiatry based on exclusion to the practice of mental health work in the community, based on the return of individuals to their communities of origin and the affirmation of the rights of mental suffering. The new way of thinking and acting denies the equivalence Mental Illness = Social threat and determines the beginning of respect for a person with psychosocial disabilities as a citizen with rights.

10. The three pillars of Italian Law 180 The three pillars of Italian Law 180 are: the ban on the building of new psychiatric hospitals and the admission of new patients to existing ones; psychiatric hospitals are to be gradually closed; prevention, treatment and rehabilitation should be conducted in community services. Psychiatric Wards for diagnosis and treatment are created in general hospitals with up to fifteen beds; compulsory treatment is admitted only for ill people unable to make decisions about their health and hospitalization is the only alternative for treatment. The relevant point is that social dangerousness is not an object of a medical intervention.

11. Decrease in the number of beds in psychiatric hospitals in Italy (1964-2000): the trend is similar to that of other countries, with the difference that Italy arrived at no beds in 2000

12. Total human resources working in mental health in Italy’s public health network (2010). Frequency per 10,000 adults. In brackets the resources that a city like Ahmedabad would have if it were in Italy Psychiatrists = 1.1 (660) Psychologists = 0.4 (240) Nurses = 3.9 (9,126) Social Workers = 0.3 (180) Occupational Therapists = 0.5 (300) (Rehabilitation Experts and so on) Administrative staff = 0.1 (60) TOTAL = 6.4 (3,846)

13. Policies and practices for mental health in Europe (WHO 2008): total health spending devoted to mental health in some European Union countries: Italy is not at the top. The maintaining of both psychiatric hospitals and community care systems increases the costs and probably reduces the resources for community care  England and Wales 13.5%  France 11%  Italy 5%  Portugal 3%  Bulgaria 2%

14. Main positive aspects of public psychiatric services in Italy (Morosini 2008) 1) Care with attention to user's psychosocial aspects 2) Focus on teamwork 3) Relatively low numbers of users with physical restraints 4) High interest in evaluation of mental health in workers (declared but not realized) 5) New, but insufficiently evaluated, impulse on work in social cooperatives with user's inclusion 6) Support for caregivers 7) Care and strengthening of self-help groups

15. Main negative aspects of public psychiatric services in Italy (Morosini 2008, modified) 1.a wide regional variability (Italy is subdivided into 20 regions); 2.a minimum "scientific outlook” (in some centres one has the impression that operators must "believe” in the “model” rather than doubting and questioning the outcome of users; 3.a low turnover of users in residences (mini-asylums?); 4.almost all university research is on drugs, genetics and neurophysiology and few studies on mental health and the effectiveness of psychosocial intervention receive funding. 5.With the severe economic crisis in Italy and the collapse of the welfare system, it is hard to work without a strong social support network outside the mental health community system.

16. The lack of quality in care evaluation in Italy Italy is eighth in the world in the SCImago ranking for scientific publications on mental health (and sixth in medicine) but Italy has not produced anything in the last twenty years on the effectiveness of mental health care systems: this is strange for a system that represents an experimental model in the world. A kind of separation has been created between professionals working in the public health system who express a desire to use an evaluative approach to the quality of care but sometimes have an ideological perspective, and the Italian academe that sometimes produces ideological statements on the Italian reform.

17. The The break between the Italian Academy and Italian Public Health System in Mental Health An editorial in the official journal of the World Psychiatric Association was significantly entitled “Technical and non- technical aspects of psychiatric care: the need for a balanced view”. The editorialist recalls a long list of the evils derived from an excess of "non-technical components" he has witnessed in some contexts in Italy, his country. Those are the consequences of an “indiscriminate denigration of our therapeutic techniques”. In a sequence of images that recall the famous monologue of Roy Batty in Blade Runner “I've seen things you people wouldn't believe….”, all the evils now seem to derive in fact from a forget a therapeutic approach consequence of an excess of "non- technical "components. In this description grotesque, Italy (and obviously the closure of psychiatric hospitals) is described as a kind of evil empire of psychiatry, where is happening thinks “ would not like to see all this at the international level”

18. According to the academic editorialist the Italian evils are: 1)“deprofessionalization of care” But we have to ask if it is professional in 2015 totally forget t a client centered approach, as today is happening in Psychiatry as above shown and discuss in a recent editorial [CMP 2015]. So if statements totally based on ideology and not on the results of the research will be as shown below can be defined scientific and professional. 2)“a myriad of “experimental” interventions, actually “experimented” without any protocol, any approval by an ethics committee and any informed consent” - Does this represent a typical feature of Italian reform of psychiatry? And if “technical components” means, in the reductionism of this editorial, the mere pharmacological approach, does the strength of multinational drug companies immune to the criticism on ethics of research?

19. According to the academic editorialist the Italian evils are: 3)“Good practices”, often with the support of politicians sharing the ideological orientation of the professionals involved” In this respect it seems to me that just the rigid self-reference of psychiatry (in league with the appeasement of psychiatry to politicians) has led to internment in psychiatric hospitals of political opponents in many dictatorships of the past, but I think this is not a feature of Italy, even if I well know all the flaws of (my) country. It is true, Italian leaders of academic psychiatry have been for decades the consultant of all Italian governments about psychiatry. Even of those who have blocked the programs of the independent research on drugs. Just in the precisely theme of appeasement of psychiatry to politicians and of politicians to drug companies. And this is not said in an ideological vision of those who see the “drug companies” opposed to “cooperatives” but simply from the perspective of those who, working in the national health system, which is the largest purchaser of the drug companies, they think that the biggest customer should not only rely on search produced by sellers.

20. According to the academic editorialist the Italian evils are: 4) “The initial enthusiasm of professionals turning into demotivation, leading to the early retirement of several generations of clinicians”. On this I deeply agree that the leaders of psychiatry need to ask himself if there is a lack of motivation of young clinicians and about causes. Hypotheses on this aspect, beyond ideological statements as those affirmed in this editorial, can be measured and verified about a scientific methodology. I have some ideas about, do you? 5)“I have seen the initial hope of parents turning into rebellion”. I who am a humble worker on mental health who has worked in at least eight different countries on three continents I have never seen in any other nation a resource so vital and valuable that the associations of family members and users in Italy do. At these very active and dynamic associations I would like to ask how much they love the Italian academy, and if, against this academy, do they nourish feelings of rebellion. This is not difficult to verify just fill out a questionnaire and propose them.

21. According to the academic editorialist the Italian evils are: 6) “Tragic suicides of young persons with bipolar disorder who had had their mood stabilizers discontinued and “replaced” by involvement in “a social cooperative”, because the “analysis of needs dictated so”. I, like many other Italian psychiatrists, prescribe many stabilizers, and unfortunately I complain of not being able to have sufficient social resources to support my patients (the same patients to which I administer stabilizers). This ideological opposition between "stabilizers" and "cooperatives" seems to me the real flaw that is behind these alleged arguments passed off as “balanced”. Is also the index of the failure to address compelling and exciting ways which produces the lack of motivation in young people. I'm not convinced that the rate of suicide is a fine indicator of good practice. But columnist says that there is so much malpractice that produces suicides. Thus I still wonder why with all this malpractice that leads to suicide, according to the distinguished editorialist, Italy is the high income westernized countries with the lowest rate of suicide? Perhaps before inopportune statements would be the case of a scientific analysis of the conditions of which we speak, in this is I agree “analysis of needs dictated so”.

22. 7) “I have seen the irrational use of antipsychotics...they regarded them as just a marginal element of care”..No wonder, given the previous opposition between "drugs" and "cooperatives" that someone has taught to many psychiatrists an ideological use of the drugs. In my region 100% of patients with severe psychiatric psychosis take drugs totally in charge of the public money (how many Western countries have a so wide access to antipsychotics?). Unfortunately only a limited number of patients leads psychosocial support programs and the staff in the public mental health, especially the staff who should be involved in the rehabilitation, is insufficient both due to the restriction of funds. In Italy a high proportion of people with subthreshold depressive symptoms in the community takes antidepressants without a diagnosis of depression, despite no evidence. However the proportion of people with symptoms fulfilling a diagnosis of Major Depressive Disorder in the Italian community that takes treatment of proven efficacy is higher compared to that of other western countries. In addition to, despite the Italian population clearly prefer psychotherapy instead of the antidepressants for the treatment of Major Depressive Disorders, and cognitive behavioral and interpersonal psychotherapies are of proven efficacy against depression, 56% of people with diagnosis of Major Depressive Episode in the Italian community takes antidepressants against 17.8% of those taking all kind of Psychotherapies. Even search results on intake of lithium in the community show rates, in an area of northern Italy, much higher than those of other community surveys in other westernized countries with an increase between 2000-2010 to 38% [22].

23. These data seem strongly contradicting with the statement than in Italy psychoactive drugs are “…just a marginal element of care”. These data seem strongly contradicting with the statement than in Italy psychoactive drugs are “…just a marginal element of care”. I agree with columnist: what is missing in the Italian psychiatry is just a culture of dialogue based of comparison of search results while triumphed ideological assertions without evidence

24. We Sardinians are Italians but in a cultural and historical perspective (and in this framework we are experiencing the problems of refugees) we are also an island in the middle of the Mediterranean

25. Background of the convention for the implementation of QualityRights in the Mediterranean The Cagliari group has collaborated with WHO in the development of tools and the package of "QualityRights” Activities in the Mediterranean area: Mediterranean Society on Mental Health; Experience in e-learning with the International master "Mental Health and Primary Care" (100 participants from 10 countries with a network of several universities in the region) Cooperation and participation on several cooperation projects: asylum seekers in Italy; refugees from Mali in camps; Cooperation in UN welfare and health in the Balkans

26. "Feelings of War under way and state of siege" in the Mediterranean area. This is the question of dealing with disability. Would it not be appropriate to deal with something else? Or maybe just stay close to home. The defense of the rights of persons with disabilities is a value shared that reflects our Catholic, Islamic and Jewish cultures. It is a civic value that must be defended in this, more than other times (Carta & Bhugra, IJSP, 2015). Syrian mental hospitals have been bombed and patients killed by snipers. Radical Islamism has swung from an initial conviction of health as "Westernization" to a façade attempt to present itself as a guarantor of disabilities (see videos in Raqqua), but the massacre of people with Down’s Syndrome in Raqqua shows little respect for the weak. Significance of the project in the Mediterranean at this historic moment

27.  First Mediterranean meeting 19-20 November 2015.  Tunisia – A pilot study already carried out at Razy Psychiatric Hospital, Tunis.  Italy – Creation of a continuous education programme in the Sardinian region mental heath network and attempt to collaborate with Geneva to promote and find funding for an e-learning activity. At least three different Italian regions are planning to implement QualityRights in their public mental health facilities.  Lebanon and Albania - interest at the political, user and professional levels: some people will be trained in Cagliari in the coming months. Current activities:

28. Tunisia, El Razy Psychiatric Hospital Methodology Tunisia, El Razy Psychiatric Hospital (Mayssa Rekhis et al, Mediterranean Meeting, Cagliari, 2015) Methodology  Type of the study: Cross-sectional.  Instruments: “ QualityRights Toolkit” - criteria and standards (WHO).  Sample: El-Razy hospital (88 persons: 35 patients, 35 professionals, 18 family members of patients.  Control Sample: people with diabetes in the endocrinology department (25 people: 10 patients, 10 professionals and 5 family members).

29. Rights assessment in the mental health and general health facilities Assessed rightsMental Health facility General Health facility Theme 1: The right to an adequate standard of living.A/IA/P Theme 2: The right to enjoyment of the highest attainable standard of physical and mental health. A/P Theme 3: The right to exercise legal capacity and the right to personal liberty and security. A/IA/P Theme 4: Freedom from torture or cruel, inhuman or degrading treatment or punishment and from exploitation, violence and abuse. A/IA/P Theme 5: The right to live independently and be included in the community. N/I

30. Comparaison of the evaluation of the rights among service users, family members and staff at El Razi (ANOVA one-way) ThemesCompared groupsMean [0-3]p value Theme 1: The right to an adequate standard of living and social protection. Service users1.27 0,97 Families1.24 Staff1.26 Theme 2: The right to enjoyment of the highest attainable standard of physical and mental health. Service users1.590,009 Families1.88 Staff1,71 Theme 3: The right to exercise legal capacity and the right to personal liberty and the security of person. Service users0,860,000 Families1,21 Staff1,52 Theme 4: Freedom from torture or cruel, inhuman or degrading treatment or punishment and from exploitation, violence and abuse. Service users1,170,000 Families1,23 Staff1,74 Theme 5: The right to live independently and be included in the community. Service users0,290,009 Families0,27 Staff0,39

31. Discussion and conclusions of the report from Tunis  Few concrete measures to implement the CRPD and by personal rather than structured efforts.  The law is still mental-disability based.  Practices are not guided by the rights and standards defined by the convention.  The existence of the CRPD is almost unknown  There is a lack of awareness, underlying the absence of training and educational activities on human rights  The role of all health facilities appears to be limited to providing medical care, excluding support for an independent life and community inclusion  There is inequity of resources between the mental health and general health facilities due to the weight of stigmatization

32.  The report ends with a set of recommendations shared with staff, family members and users: it could have been the starting point for an improvement project.  Mayssa Rekhi, the doctoral student who led the study, left Tunisia (not unusual in most Mediterranean countries at this time).  Rym Ghacem is trying to raise awareness of the competent authorities and she is trying to organise a training plan with our help to start from where they stopped.  Right now only Tunis is accessible (with difficulty) to foreigners who cannot move around the country. This is a common situation in Mediterranean countries of the southern shore: a link via the Internet with the possibility of discussion and partial training with e-learning is crucial.

33.  Translation into Italian of the main tools (pending approval)  Two training modules (August 2015, January 2016) conducted on the evaluation of quality of services. Two training pilot courses scheduled for March and June on improving practices through the use of tools developed by "QualityRights". We await representatives from Lebanon and Albania.  A continuing education course will be set up with two courses per year in Italian and a summer school with alternating languages each year (French and English).  About to commence is the first study and action on two local services involving people already trained, but a project has been presented to the health autorities for financing an action involving the regional mental health facilities.  Other initiatives in Trieste (Northeast Italy) and L’Aquila (Central Italy near Rome).Italy

34.  Developing a model to manage mental health emergencies that respect the rights of patients In accordance with the guidelines of the WHO QualityRights project  Discussion of legal and regulatory aspects in apparent contradiction with the Convention on the Rights of the Disabled  Promoting Quality Rights in public mental health facilities Creating a national committee for the coordination of the QualityRights project

35. Conclusions QR is not a program that aims only to extend some principles: it offers instruments for the measurement of quality of human rights with defined indicators, standards (QR Toolkit) and tools to improve attitudes and practices that respect the rights of people with disabilities (with specific reference to the United Nations Convention). Italy is a country that was the first (and only one) to close psychiatric hospitals, but until now it has been unable to create a culture of evaluation of this new perspective. With the help of users, this may represent an opportunity to correct past mistakes.