This year the Liegro Foundation is part of the team of organizers of the Via Francigena Festival which has reached its eighth edition. From May to November, over 500 events are planned on the theme "The Way. The food of the soul".
The group has been experimenting with walking as nourishment for the soul and as a source of psycho-physical well-being for some time Fast walk. For several years, every Wednesday, a meeting at the Eur lake in Rome, then long walks outside the neighborhood to discover the city and a more beautiful way of being in the world.
On 11 and 12 May 2018, the Di Liegro Foundation participates in the national meeting "Rights, Freedoms and Services" promoted byUnasam (National Union of Mental Health Associations), on the occasion of the forty years of the Basaglia law.
Approved on 13 January 1978, law 180 sanctioned the closure of mental asylums, bringing the inmates back to the outside world, restoring rights, dignity and citizenship to people with mental disorders.
A "revolutionary" regulation that has become a reference in the world for those who work in mental health.
Even today, although hindered, implemented only partially and even betrayed, the Basaglia law is a powerful engine of transformation of the institutions for the affirmation of the civil and social rights of the most fragile subjects.
The full implementation of law 180 - comments Luigina Di Liegro, president of the Don Luigi Di Liegro International Foundation - requires a new impetus, a renewed attention to the problems of mental health. It's not just about strengthening and redeveloping mental health services. We need to bring the issue of the rights of people with mental suffering and their families back into the cultural and political debate of the country."
The Rai 3 program "Buongiorno Regione" recounted the activities of our foundation...
On 11 and 12 May, the Di Liegro Foundation participated in the national meeting promoted by Unasam (National Union of Mental Health Associations), on the occasion of the forty years of the Basaglia law.
Approved on 13 January 1978, law 180 sanctioned the closure of mental asylums, bringing the inmates back to the outside world, restoring rights, dignity and citizenship to people with mental disorders.
A "revolutionary" regulation that has become a reference in the world for those who work in mental health. Even today, although hindered, implemented only partially and even betrayed, the Basaglia law is a powerful engine of transformation of the institutions for the affirmation of the civil and social rights of the most fragile subjects.
The conference was held on Wednesday 21 June at the Auditorium via Rieti "Recovering: care networks and mental distress" promoted by the Don Luigi Di Liegro International Foundation and the Fondation d'Harcourt. It was presented during the day a research on users, families and mental health services in Rome.
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The event on Radical Radio.
The topic of mental health in Rome was recently the subject of research carried out by the Don Luigi Di Liegro International Foundation with the support of the Harcourt Foundation and in agreement with the Local Health Authorities (ASL) - and the Mental Health Departments (DSM) of the metropolitan city. The results of the investigation, reported in the volume “Care networks and mental distress” (Palombi Editori, 2017), are presented here in summary. The research investigated the needs of users and families, their relationship with Mental Health Centers (CSM) and their functioning, interviewing all the parties involved: users, family members, operators, managers of the CSM and DSM, presidents of voluntary associations.
The investigation, in addition to covering a knowledge gap on the subject, wanted to draw the attention of citizens and institutions to mental health in a phase of great difficulty for local services following the severe spending review, aggravated in Lazio by the deficit reduction plan in healthcare. During the research, the crucial phase of the merger of the Roman ASLs (reduced from 5 to 3) was also underway, which also provided for a broader configuration of the DSM (including the Protection of Mental Health and Rehabilitation in developmental age - TSMREE - and the Dependencies) and new tasks (management of residents of the Residences for the execution of security measures - REMS - coming from the former Judicial Psychiatric Hospitals and the definitive implementation of penitentiary psychiatry). The research achieved its cognitive objective by strictly adhering to method parameters and user sampling criteria and by using multiple data collection tools. Once the universe of users of the five Mental Health Departments (of the former ASLs) had been delimited, which was quantified at 15,051 units1, the variables for extracting the sample of 500 units – 100 for each DSM – representative of this universe were identified. The variables with which the sample was stratified are: the territory, with interviews with users of all 24 CSMs of the metropolitan city and the two Youth Intervention Units (Colpo D'Ala and PIPSM); the diagnostic classification, distinguishing users with serious disorders and common disorders or DEC2, and the age with the distribution of users into three age groups: young adults (18-35 years old), mature adults (36-56 years old) and elderly adults (over 56 years old). The research also framed, on a predominantly qualitative and subjective level, the main aspects of the phenomenon by examining the merits of the users' needs, the condition and experiences of the families, analyzing the relationship of the former and latter with the CSMs, verifying operational processes and response capacity of these and collecting evaluation elements capable of highlighting critical aspects, but also innovation. It also focused attention on the new participatory processes of family associations and volunteers involved in the sector. All this in the knowledge that a more in-depth knowledge of the phenomenon helps reflection and facilitates hypotheses of change.
1 The reference universe is made up of the prevalent users of CSM (active in the last 3 months) in adulthood, with a diagnosis in their records and exclusion of those who turn to services for "medical-legal investigations". They also had to be known to the Service and in treatment for at least 12 months and no more than 20 years (first taken into care no earlier than 31.12.1996).
2 The disorder classification codes are those that refer to IDC IX, under code 300 there are the most serious disorders and above the less serious ones and common emotional disorders (DEC).
In Italy, the psychiatric care reform law – n. 180/1978, included in the same year in Law 833 establishing the National Health Service - has radically changed the scenario of treatment of people with discomfort and mental disorders. The center of gravity of assistance has moved from the psychiatric hospital to the local area, and a series of integrated services have been established - through a departmental organization - which must respond to the complex needs and treatment and rehabilitation/inclusion paths of users without neglect the prevention/promotion of mental health. The law envisaged, among its objectives, the creation of Mental Health Centers (CSM) in defined territories flanked by day facilities and small residential communities with different levels of protection. It has also provided for special psychiatric units within general hospitals (SPDC - Psychiatric Diagnosis and Treatment Service) with a maximum of 15 beds each, for hospitalizations of patients in a state of acute pathology that cannot be dealt with otherwise. However, the reform, which was seen with interest by many countries that were inspired by it, was implemented in a partial and uneven way in Italy, due to the profound differences in the service system of the different geographical areas, especially since it was the burden of developing detailed practices to organizationally translate the general principles of the law has been delegated to the Regions. This difficulty led the Ministry of Health to approve the Project Objective (PO) “Protection of mental health”, in order to make the application of psychiatric reform homogeneous on a national basis through a territorial and community care system, whose nodal point is the Mental Health Center (CSM). This OP also connected the psychiatric hospitals - closed to new admissions but effectively abandoned to themselves - to local services, with plans to discharge patients to alternative facilities. Their definitive overcoming occurred everywhere only on the threshold of 2000 and with the impulse of a second Project Objective “Protection of mental health 1998-2000” which also included an information system for monitoring services, users and performances. With it, some standards of care to be achieved were specified, such as: the promotion of mental health throughout the entire life cycle, also within preventive medicine and health education programmes, the primary and secondary prevention of mental disorders, the reconstruction of the emotional, relational and social fabric of people suffering from mental disorders (tertiary prevention), the reduction of suicides and suicide attempts in the population at risk. The strategies indicated for achieving these objectives included: – the more active role of CSM in prevention, through the promotion of mental health in the community; – the construction of an integrated assistance network capable of involving primary care and social services; (primary care includes basic medicine and district services) – the formulation of individualized therapeutic plans; the establishment of multidisciplinary teams to take charge of the most serious and complex cases; – the provision of treatments based on scientific evidence; the involvement of families in the therapeutic process; – the implementation of specific programs for complex patients who are poorly compliant with the treatment plan; – the promotion of self-help groups; – the implementation of external awareness programs aimed at the general population to reduce stigma and increase access to services.
Even with the contribution of this second Objective Project, the process of transformation and organization of services continued to be slow and irregular, so much so that in 2012 only half of the Italian regions had a regional plan for mental health (which became mandatory in 1992) and almost never structured on the basis of epidemiological data collected on the communities involved. Therefore, despite the common development of the organizational model based on the DSM, considerable regional variability in the provision of services remained. In the meantime, the World Health Organization (WHO) intervened with the "Mental Health Action Plan 2013-2020” which recognizes the essential role of mental health in achieving health for all people and includes, among its main objectives, the provision of integrated mental health services, local social assistance, the implementation of promotion and prevention strategies together to information systems to support scientific evidence and research for the continuous improvement of the quality of services and their innovation. On the basis of this push, the Unified Conference of the Presidents of the Regions and Autonomous Provinces approved the “Action Plan for Mental Health” (PAN-SM) which involves the definition of health objectives for the population, actions and actors as well as the definition of criteria and indicators for verifying and evaluating results. The document refers to homogeneous areas of intervention and offers methodological indications useful for outlining an innovative project. In particular, the 2014 State-Regions agreement identified the so-called "priority needs", on which to develop the management paths - diagnostic therapeutic assistance (PDTA) - in reference to the area of serious, persistent and complex disorders and the area of childhood and adolescent disorders. Attention is also paid to the integration between services to ensure continuity of care. The Plan also had the double merit of redefining the concept of essential levels of assistance (LEA) in mental health, declining it in terms of "path of taking charge and requiring care" and thus encouraging the overcoming of the “performance” – and to designate the Ministry of Health together with the Regions as responsible for periodically verifying the achievement of the objectives through the implementation and use of information systems, in light of the shortcomings in the systematic collection of epidemiological data. Following this, in 2016 it was officially presented by the Ministry of Health first “Mental Health Report” (RSM) after collecting data relating to the territorial offer, hospital and residential care and the overall activity of the Mental Health Departments. There Italian Society of Psychiatric Epidemiology (SIEP)3 was thus also able to highlight the strengths and weaknesses of the mental health care systems of each Region.
3 For a summary of the information systematization work carried out by SIEP, see (ed.) Starace F., Baccari F., Mungai F. (2017), Mental Health in Italy – Analysis of the structures and activities of Mental Health Departments. Notebooks of Psychiatric Epidemiology No. 1/2017.
It thus emerges that in 2015, 183 Mental Health Departments (DSM) were active in Italy, 1 for every 277 thousand inhabitants. The network of services provided for by the reform law and located throughout the territory amounts to 3,791 units (Table 1). They are the Mental Health Centers (29,4%), which act as the hub and director of community psychiatry. They interact with the residential structures (the 48,5%) distinguished within them by the different intensity of care and with the semi-residential structures (22,1%) represented by day centers and, to a lesser extent, by day hospitals. Then there are the hospital inpatient facilities with 10.5 beds per 100 thousand inhabitants of which 76.1% are public, the only ones available in 12 out of 21 regions. The number of beds in the special hospital departments (SPDC) is the lowest per population in Europe4 with an average hospital stay of 12.6 days, which is affected by over 8,700 hospitalizations in compulsory healthcare treatment (TSO), equal to 17.3 per 100 thousand inhabitants. The total users treated by mental health services in 2015 were 777,035 units, and in 47.6% they were made up of subjects making their first contact with them. The services provided per user were 13.5. The people counted in residential facilities are 29,733, while the number of users registered in semi-residential facilities is slightly lower (28,809) as revealed by the similar rate (Table 1). The number of residential beds estimated today (25,720 equal to 5.1/10,000) reveals a growing figure compared to that found in a previous survey5. The overall number of employed personnel is equal to 29,260, with a ratio of 58 operators per 100 thousand inhabitants, poorly adequate to support the demand that flows to the services (on average 1 operator for every 26 users in 2015) and clearly below the standard of 1 operator for every 1,500 inhabitants indicated in the two Objective Projects. If this standard were implemented, the number of employees would have to be 33,800 and the local health authorities are trying to remedy their shortage by resorting to service cooperatives that assist mental health services with some functions.
In our country, healthcare spending on mental health also remains below the minimum threshold of 5% of healthcare spending: it was 3.7 billion euros (73.8 euros per resident) and represents 3.5% of healthcare spending overall, lower rate of 10% than that recorded in countries such as the United Kingdom, France and Germany and largely destined for residential care (above 50%). The data reported from the Lazio region in 2015 illustrate a situation of greater shortage of services and human resources66 compared to the national one. There are 12 Mental Health Departments (1 for every 410 thousand inhabitants), while the service network, made up of Mental Health Centres, semi-residential and residential facilities, is 256 units. Of these, 28.5% is given by the CSM, below the national index and even more so are the residential and semi-residential structures. Also noteworthy is the gap recorded compared to the country in terms of ordinary hospital beds (7.3/100 thousand inhabitants vs. 10.5) and in terms of number of employed personnel (45/100 thousand inhabitants compared to 57.7) for which there are 2,213 operators instead of the 3,281 "expected" from the ratio of 1 employee for every 1,500 residents. The region is also below the national figure with regard to the % incidence of the cost of mental health services on overall health spending (3.3%). In 2015, there were 68,217 users treated by mental health services in the region, with a rate of 1,386/100,000 inhabitants. (compared to 1,594 recorded in the national context) and new users (first contact) constituted 64% of patients treated during the year, a proportion well higher than that recorded at national level, signifying good access to services and greater staff turnover 'user. Lazio also stands out for a significant growth in the incidence of cases with "schizophrenia and other functional psychoses", attesting to a greater orientation towards filtering users by privileging the treatment of the most serious and complex cases. The services provided were 721,962, or 11.6 per user, also in this case lower on average than the national value (13.5). Significant variations of a minus sign are found with respect to all indicators of hospitalization in Psychiatry hospital departments (with the various discharge rates, average length of stay, number of TSO), unlike the indicators on the presence and trend of users in residential facilities. Ultimately, the data on the mental health services of the Lazio Region in comparison to the national reference values show quite a few discrepancies: as can be seen from Tab. 1, to the greater deficiencies in the offer of CSM, day centers, residential facilities and beds in SPDC, with the related hospitalizations and a shorter average length of stay, two regional anomalies emerge for the positive values regarding readmissions to hospital within 30 days (+13.1%) - compared to shorter hospitalizations on average - and the increase in users in residential facilities (+66.1%). This last data leads us to «hypothesize that a significant portion of the demand for mental health, in the presence of service deficiencies, is intercepted and absorbed by the residential offer»7. Finally, it is worth underlining the peculiar lack of mental health services in the Lazio region, i.e. the number of employees (-22.1% compared to the national figure, which is also deficient) with a gap of over 1,000 units compared to the parameter introduced with the two Objective Projects on mental health.
Tab. 1. Comparison between national data and those of the Lazio region for a series of indicators on mental health structures and activities
*Inhabitants are residents aged 18 or over. Source: based on data from the Mental Health Report of the Ministry of Health 2016
6 (ed.) Starace F., Baccari F., Mungai F., Mental health in Italy, op. cit.
567 users interviewed - representative by territory, diagnosis, age group, sex and length of treatment - after having retraced the care history, provided a series of data on their living conditions and experience with the services and their evaluations of them. Their prevalent profile is female, aged close to 50, diagnosed with a serious disorder that emerged in the epicenter of youth, sometimes interrupting their studies - but the figure for graduates is higher than that found among the general population - and above all by inhibiting the project of married life and largely compromising the professional path (Tab. 2).
Tab. 2. Profile of users interviewed (567)
Source: 2016 survey, Don Luigi Di Liegro International Foundation
What is not confirmed is what is in the collective imagination, which tends to superimpose the person on his illness, representing needs, desires, life habits of users that are different or distant from normality (Tab. 3). They implement the usual behaviors specific to everyone's life, such as shopping, riding the tram or doing physical activity. They especially like being with friends and dedicating themselves to a hobby and their enjoyment of recreational and cultural activities and events is no different from that found in the general population. Like all citizens, they express desires and aspirations (while a fifth appear resigned or apathetic). Their active participation in associations of various types is similar to that of everyone else and they demonstrate that they have a fair amount of competence in the skills that denote autonomy and social skills (care for health, body, clothing...).
Tab. 3. Activities of daily living (out of 567 users)
Source: 2016 survey, Don Luigi Di Liegro International Foundation
The relationship with the services is punctuated by appointments which in most cases have a monthly or even less frequent frequency, except for those who benefit, but less than once, from psychological interviews, individual or group psychotherapy. The psychiatrist is the operator who assists the greatest number of users with interviews, visits and pharmacological checks, followed by the psychologist and the nurse who can carry out more tasks. Various rehabilitation activities are also carried out at the service or the adjoining Day Center - with a multi-week frequency in this case - with a limited contribution of rehabilitation operators. Occupational or laboratory activities and tools that bring users closer to the world of work (job grants, internships, insertion projects) have a rather limited diffusion. Just as economic subsidies and social assistance benefits, which have been in decline in recent years, are in relation to needs. The same can be said of home visits which, as verified in the users' care excursus, occupy a marginal place, which confirms the tendency of the service to change from a center for irradiation of interventions on the territory ("socio-environmental") to a place of outpatient services. However, less than half of them believe they have received from the operators the proposal for a therapeutic-rehabilitative project, foreseen for serious users, but which there is no customary formalization of by the Roman service teams. Users generally evaluate the operators' attitude of care positively because it is centered on respect for the person and correctness in terms of humanization of the intervention (recognition of dignity, confidentiality, non-judgmental attitude).
Users also mostly declare adherence to the service in terms of regularity in taking medications, intent on relating positively with operators and collaboration in the treatment, guaranteeing regularity/punctuality. In the evaluation of the service, the least favorable opinions concern the home visits (few), the relationship between the operators and the family members (little contextuality of taking charge) and the interaction with the other users. What matters most for the user is a good relationship with the operator and "feeling followed". Two aspects of dissatisfaction, which have to do with the lack of human resources of the CSM, now clearly emerge among the most attentive and demanding users: fewer appointments and shorter interview times with operators. It is no coincidence that when asked what the service could do more for them, they respond with "regular" or "more frequent" visits or "being followed up more assiduously". Therefore there are users who have the impression of not feeling "taken into consideration", of not being treated with due attention and "dedication" by operators. Among the things they like least about the service are the problems of secretarial service, reception and telephone communication with the operators or the impossibility of meeting them when needed even outside of an appointment. Explicitly critical voices are a minority but they constitute a wake-up call for a service that risks becoming increasingly outpatient and performance-based. There are critical findings regarding the following services considered insufficient: - psychotherapies - rehabilitation opportunities - activities of everyday life, with recreational, cultural, training value - tools for starting work, a real "black hole" ” to encourage the recovery of an active and inclusive citizenship – the pharmacological treatment and the dilapidation and poor comfort of the CSM premises. Users also report aspects of positive change following their care path and treatment at the CSM (Table 4). Above all, the increased awareness of the disorder and the consequent greater collaboration with the service. What also emerges is a perceived greater confidence and hope in the future, a recovery of self-esteem, and a life that tends to be richer in interests, activities and relationships. Therefore, in the imagination of the majority of users interviewed, the near future appears in positive terms, while just over a third of them express a personal sense of "impotence", "uncertainty" and, above all, "fear" regarding their own not distant future. Compared to how the years to come are represented, the type of disorder and the length of time taken into care do not make a difference, while the greatest optimism is shown by those who live with various degrees of autonomy in supported or autonomous apartments (see Tab 7). The family is by far at the top of the list of "resources" that help them live better, while overall the help they receive outside the family from friends, acquaintances, neighbors or volunteers is modest. They are often alone with some family member, mostly elderly, facing a hardship that involves their entire life and in all its aspects and they feel they cannot do without the CSM and the relationship with the operator, expressing the fear that a further downsizing of the service would affect the timing, frequency and quality of this relationship.
Tab. 4. Positive changes in the patient since being treated; comparison between samples of users and family members
The total exceeds 100% because multiple responses were possible
Source: 2016 survey, Don Luigi Di Liegro International Foundation
The 254 family members interviewed, most often the maternal figure, are the natural caregivers of the CSM users and the majority of them (59.5%) participate in the multifamily groups now activated in all the territorial services of the capital (Graph 1). Therefore the sample represents the family members closest to the users (the so-called caregivers), of whom they are constant companions, and closest to the CSM by which they are variously involved. For these two characteristics are also the family members of users with serious disorders.
They have little membership in family associations. This affects their relationship with services which occurs at an individual level and in no particular order. Therefore it is up to the city or departmental councils to promote proposals that have an impact on the CSM. (Table 5). Their participation in self-help groups is wider, for which there is still ample room for growth given the potential demand of almost 50% from those who are now unfamiliar with them and/or interested in participating.
Tab. 5. Profile of family members interviewed (n. 254)
Source: 2016 survey, Don Luigi Di Liegro International Foundation
The interviewees retraced the care history of their family members and gave an account of the difficulties encountered in managing the case and their frequent experience of loneliness in dealing with it, first to understand what was happening and who to rely on and, then, to assist the patient in the daily life of the life. The first onset of the disorder, which can be placed above all in the most critical phase of the transition of the life cycle from adolescence to youth (18-24 years), often saw the family unprepared and uninformed regarding the disease and the most suitable services to deal with it. But also undecided internally, oscillating between the attempt at removal and underestimation, little supported and not always well advised in this by the family doctor, who despite knowing the specific situation (in 68.5% of cases), does not carry out to an extent adequate its role as first observer of the problem and natural referral to mental health services. On the other hand, the CSMs have also loosened their operational and training connection with them in recent years. It thus happens that the patient arrives at mental health services "late", on average 6.6 years after the first onset of the disease, especially those who contract the disorder as a minor, due to a lack of continuity in taking charge between the different sectors of responsibility in the care that, now finally, an integrated vision of mental health services seems to be able to better guarantee for the future. The family member mostly arrives at the CSM after having wandered around the private care circuit for a few years, primarily by turning to a specialist, often recommended by the general practitioner (Table 6). Therefore, almost 40 years after law 180 which affirmed the centrality of the territorial service, to date only a fifth of users arrive early. The person referring to the CSM is mostly the family member (finally informed), a relative, a friend or the patient himself, often after a process of psychiatric visits and/or psychotherapeutic sessions which in the case of a serious disorder did not result a satisfactory result. The family gives up or is urged to turn to the CSM, the terminus of a new care path. In their average long care history, the users represented by the 254 families have seen the intervention of 4 different types of services. Of them, 73 out of 100 have experienced an inpatient facility (SPDC or private acute facility) and almost 3 out of 10 have had a TSO – Compulsory Healthcare Treatment. A quarter of the sample includes those who have been guests of a therapeutic community or a social-rehabilitative residential facility or occupy a place in a "supported" apartment. The rehabilitation services of the Day Centers and various laboratories are highly desired by the interviewees, both as a function of lightening their care burden and to encourage socialization and perhaps the learning of skills by their family member in view of a job placement that today it has little chance of landing, despite the efforts of the production and work cooperatives connected to the CSM themselves. Therefore, work is among the major concerns of the people caregiver family members and follows only the worry of "after us", a solution that is being addressed in Rome with a certain vigor after the successful experiments of apartment groups or supported homes with seriously ill patients, which also bring the services back to the center of attention home care. This otherwise appears to be a residual performance of the CSM - after its peak of diffusion in the decade following law 180 - not very sustainable with the current staff shortages. The testimony of family members also highlights the problems in patient care, particularly in the initial stages of taking charge, following the refusal of one or more services (1 user in two) due to denial of the disease or non-acceptance of it, the overcoming which, not surprisingly, is recognized as the most positive change observed over time following treatment.
Tab. 6. Care history of your family member from the onset of the disorder to today
Source: 2016 survey, Don Luigi Di Liegro International Foundation
The patients' relationship with the CSM, according to their family members, is characterized positively, in order of priority, by regular intake of medicines, by keeping appointments ("very"), by the positive relationship with the operators up to collaboration in the treatment (“enough”). Among the things that 68.5% of patients like most from the CSM are the relationship, the conversations with the doctor and psychologist (above all) and the rehabilitation activity based on socio-cultural, recreational and pre-training activities. The declared dissatisfied people (38.2%), on the other hand, highlight organizational aspects of the Centres, from the secretariat to telephone communication, and also complain about the rarefaction of meetings, often also reduced in the time spent listening and interacting with operators who are overloaded in Centers that are running out of human resources, in full agreement with what users complain about. The interviewees belong to contexts of expected vulnerability as is a third of the sample due to familiarity with the mental disorder, given that other members of the family or relatives have resorted to mental health services, or as the 20% who declares to have difficulties economic (3 out of 10 also considering the past). There is then a similar share of those who, following the family problem, have seen their marital relationships torn apart and subjected to strong conflict, not to mention situations of isolation from the parental circle and/or the local context. There is also no shortage of repercussions on the physical health of family members, almost always the caregivers. The non-onerous external help on which the patient can count as friends, neighbors or volunteers - which lightens the role of family members even just in terms of company and friendly support - is a privilege of few (12 families out of 100 benefit from it). This vision of a "relational void" of one's suffering family members is not shared by the sample of users who boast many more friends (among these there are often laboratory companions or users of the facility they frequent). However, this underestimation by family members is indicative of a worried, pessimistic and perhaps exasperated view of the situation of their suffering relative, as other indicators confirm. Coping with the situation of psychological distress involves many sacrifices and problems for family members such as time taken away from their lives. The central focus of the suffering person's condition swallows up all energies and resources. The entire family is forced to face increased expenses or lower income for patient care, as well as inevitable sacrifices (such as some travel, some purchase or investment). But this can also result in decreased attention to minors or elderly members, who also need attention and care. Training sessions for family members based on the transmission by the service of useful knowledge to better deal with illness and moments of crisis are not yet sufficiently widespread, and even less so are "psychoeducational groups" that work on the emotional climate of families; both would allow family members to be qualified as sensitive antennas for operators on the evolution of the patient's status. Multifamily groups, however, are important both as an experience of knowledge for operators and as an opportunity for family members to reflect their own situation in that of others, sharing and understanding dynamics and experiences. Those who participate in GMF - Multifamily Groups - particularly widespread in the CSM of the former RMA which started them in 1997 - inevitably demonstrate a better and more intense relationship with the services, thus taking care of the entire family.
Regarding the relationship with the operators, the interviewees believe that they are available for dialogue and show trust in them, but less inclined to provide constant information on the relatives undergoing treatment. The majority of families (63.3%) receive concrete help from the service - in particular the largest ones who are also those who declare they need it least - while there is a prevalence of cases (58.3%) who would need some help without receiving it. “Listening and understanding” is the help most offered to families, while what they need most consists of “knowledge and treatment of the disorder”, as if to say that there is still a wide margin for intervention to make the family an added resource and participates in the service by responding to a real "question". Family members are more satisfied with the mental health service than their relatives; if just under 50 percent of them declare themselves "very" satisfied, the average patient figure is "fairly". The figure who is consistently least satisfied or most critical of the CSM is the maternal one, who represents the users who have shown the first symptoms of the disorder in developmental age and with the longest relationship with the services. Regarding the positive changes recorded by family members in the current phase of the home users' treatment path, the level of awareness of the disorder that the patient is now able to accept and the greater compliance with the services stands out. Only 16 cases out of 100 reveal completely unsatisfactory results. Among these, the progress recorded by shares of users in their social life, in the activation of interests and in greater trust and hope for the future are not of secondary value in statistical or, above all, qualitative terms. Less positive news comes from the acquisition of employment and housing advantages for a more independent life. And this is what family members would like most from services, primarily help in entering the world of work. The aspects of socialization and activation of users and their support of volunteers who perform a proactive function are also part of the three main expectations that families have on average towards CSMs. Without forgetting that in second place in this ranking is the need not to leave the family alone in dealing with the mental disorder. And this is connected to the pre-eminent concern of families: that of assistance "after us". This concern also determines the state of mind of family members in imagining the near future of their loved ones suffering from a mental disorder and tips the scales towards pessimism, given the fact that they favor "impotence", "fear" and, above all, "uncertainty" compared to "trust", "hope" and "change" (Tab. 7). And this despite the fact that they give a substantially satisfactory opinion on the services. Differently, in the users' imagination the near future is revealed in predominantly positive terms, with words such as "hope", "trust" and "change", while only just over a third of users express terms cloaked in pessimism. However, there remains that 44.7% of interviewees, including users and family members, who look to the future with some notes of pessimism and among these there is the 17% who expresses "fear". This signals some difficulties in the quality of the user-operator relationship, as demonstrated by the complaints mentioned above - from users in particular - and on which mental health services must continue to work. What to do therefore? Don't leave the family alone, reassure them by strengthening their skills regarding the disease, guarantee the quality of care and improve the lives of patients by helping them in acquiring the essential goods of every citizen (work, home, socialization...) so that they can take them back into their own hands their life with a plan that targets the disorder.
Tab. 7. Keyword of the user's state of mind regarding his not too distant future; comparison between samples of users and family members
*The total exceeds 100% because some respondents gave two words an ex-equo
Source: 2016 survey, Don Luigi Di Liegro International Foundation
The operators interviewed are 227 - the majority of those active in the 26 CSMs of the metropolitan city (i.e. the 52%) - representative of all the professional figures (Chart 2) and with an average long professional experience, 24.5 years, and mostly not limited to just one service (55%).
These are those who agreed to self-completion the questions of a questionnaire delivered on the days in which the interviews with users of their service were carried out. They are the operators who facilitated, with their appropriate mediation, contact with the users to be interviewed, thus allowing the constraint of privacy to be safeguarded. The "insiders" believe that the major shortcomings in the way in which their services operate are linked to the necessary resources, both their own and those present in the area - and rarely integrated - which allow patients to have a normal level of social life despite with their pathologies. In fact, the needs that the services are least able to satisfy are those of a social nature, primarily job placement. The CSM staff is, however, satisfied with how they develop reception (satisfactory in terms of methods and times) and taking charge, with the preparation of the relevant personalized therapeutic-rehabilitative project, even if it is not formalized and agreed with the family members and the users, the latter still little supported with counseling techniques centered on empowerment and little valued by the services as bearers of proposals to be collected in meetings or gatherings (Tab. 8). However, the commitment to include patients and family members in multifamily therapeutic groups (a place of sharing, meeting and support) is noted, but less with reference to the establishment of training, psychoeducational and mutual self-help groups for family members.
Tab. 8. Operators' evaluation of some ways of operating mental health services
Source: 2016 survey, Don Luigi Di Liegro International Foundation
Operators recognize that families have significant problems and difficulties, in particular situations of tension, conflict, economic and social precariousness, certainly complicated by the presence of a relative with disorders. They express great appreciation for the attitude of collaboration, trust and willingness to dialogue of the family members, but this does not seem to interfere with their defense of the privacy law, which is instead contested by the family members who are prevented from accessing their family's health documents. joint. A debate opens here to clarify whether this rule has reason to exist in the current rigidity, especially if one thinks that the involvement of family members must have as its aim the formulation of a shared therapeutic-rehabilitative project based on a "therapeutic alliance". The interviewees are aware of the strong critical issues that characterize their services, starting from the overload of work in lack of staff, the aging of this which is accentuated over time, the lack of an adequate turnover, as well as the poor investment finance in the sector. These problems require them to adapt greatly and involve greater commitment, creativity, connectivity with service and non-service resources, as well as the need to deepen training, especially in terms of relational skills and quality of communication with users and family members and on aspects of innovation. What emerges is a lack of information tools and constant evaluation of the service with moments of reflection on the data collected and appropriately processed (see Tab. 8). However, operators are mostly aware of the importance of evaluating the work of their service with the need to adopt varied, procedural indicators (first and foremost, the reduction in hospitalizations as a result of good crisis prevention work) and well-being of the patient. The latter refer to the outcome ones on which their culture is still in progress, but those proposed by the research and favored by them refer to the patients' expectations and are in order: enrichment of relationship life, stabilization of the disease, recovery of confidence through self-experimentation in small projects that give hope of recovery, work as a goal (as one interviewee said "without work the circle doesn't close") which calls into question the culture of social inclusion. Even the function of residential care is conceived by a relative majority with a view to the goal towards the autonomy and self-determination of the subject, under penalty of its chronicization in a new asylum in merely welfare or protective places for users and communities. Finally, the research revealed the degree of agreement of the operators with respect to some statements that qualify mental health services in a modern sense. One of these, largely approved by the interviewees, goes in the direction of supporting the protagonism of users starting from their strengths to follow recovery paths chosen by them or with their consent which brings us back to "nothing that concerns me without me », one of the 7 Tavistock principles taken up in the National Health Plan 2003-2005 (Ministry of Health). This is consistent with the widespread concern of operators for the lack of tools and resources useful for supporting these citizenship recovery paths.
The research carried out 41 in-depth interviews with leading figures of Roman mental health (directors of DSM, managers of UOC-Complex Operational Unit and of CSM). From their testimony emerges a worried assessment of the highly problematic situation of the sector, which is also burdened with new tasks which imply a strong commitment for the CSM on several fronts: the management (including bureaucratic) of the users of the accredited residential facilities, the intervention for former OPG inpatients, the presence in the penitentiary setting, the intense collaboration with the service for the protection of mental health in developmental age (TSMREE) and with the Addictions Service, as well as the improper solicitations to play a role of " social security” with respect to all the behavioral anomalies delegated to it in the communities in which they operate.
The situation of mental health services is marked by a generalized criticality which tends to worsen over time, that of the reduction of staff in the absence of turnover and, with it, the lack of generational turnover (Table 9). This criticality affects the operations of the CSMs and the quality of the operators' work. With the thinning of the workforce, further mergers of services are also likely and with this the territorial projection of responses is penalized. The dramatic and unsustainable nature of the situation prevents the implementation of community psychiatry: it is now almost impossible for the CSM to carry out health promotion, prevention and early intervention, while that in schools is delegated to a few units specialized in adolescents and young people and relationships with general practitioners are now obsolete or occur in no particular order. The gradual and continuous contraction of the workforce generates substantial problems. The moment specific functions are lost with the departure of appointed operators from the service, the know-how of knowledge is impoverished. This contraction also prevents teamwork based on multidisciplinary sharing and discussion of cases with more serious and persistent disorders. The resulting risk will be the tendency towards outpatient work and services where the administration of drugs will represent an easy shortcut. The therapeutic-rehabilitation plans, although not formalised, remain incomplete and difficult to implement. The tendency is to select users based on severity but without guaranteeing the prognosis of those suffering from common emotional disorders. The workforce is increasingly lacking in the figure of the psychologist (with a relative reduction in psychotherapies), the social worker (with increasingly inadequate responses to the social support needs of the users), and almost everywhere the rehabilitation staff (educators and rehabilitation therapists ) which, with some exceptions, is limited to the management of the day centre, which is also in difficulty due to the decline in resources and the low turnover of its users, while openness to the territory and its resources is starting to take place in some experiences . The time dedicated to the relationship between operators and users is reduced, as is the frequency of visits, frustrating the need for unscheduled communication on the part of users and tightening the reception and secretarial functions of the services. It is no coincidence that operator-user communication, highly sought after and appreciated by the latter but also considered among the critical aspects, explains the accentuation of the importance that the managers of mental health services attribute, in the training of operators, to the issues of “relationship” and how a “therapeutic alliance” is created with the user.
Tab. 9. The major critical issues of the CSM due to the thinning of the workforce
| 1 | Reduction/renunciation of mental health promotion and prevention |
| 2 | Selection of cases by severity/complexity of disorders |
| 3 | Compromise of team work in dealing with the most serious cases |
| 4 | Accentuation of the lack of response to the social needs of users, especially at work |
Tab. 10. Aspects of innovation in mental health services
| 1 | Attention to early intervention on young people Therapeutic and multi-family groups |
| 2 | Interventions on living (personalized and supported apartments) |
| 3 | Integrated rehabilitation with the CSM and outside the Day Centre |
| 4 | ORGANIZATIONAL INNOVATIONS (Case management, "Quadrilatero" and connection between territory and residences, reorganization of residential paths by territory and/or by type of user, integration with the reception district, scheduled home care) |
| 5 | INNOVATIONS IN THE TOOL LEVEL (Computerized medical record) |
The research interviewed the presidents of the most active family and volunteer associations to reveal their role, their relationship with the CSM and to evaluate the state of the provision of services (Tab. 11). As a first salient fact, it emerges that family associations in this sector have now developed the awareness that they cannot limit themselves to carrying out an information and advocacy or protection function for the benefit of families, but that they must assume an operational commitment towards people with mental disorders, sometimes in collaboration with mental health services. It is the acknowledgment that public responses are not able to sufficiently and/or satisfactorily satisfy all the needs of citizens with mental disorders. The orientation of the associations is to play a subsidiary role, intervening with their own proposals, resources and interventions to implement the public services with which they intend to collaborate so that they function at their best. The CSM, despite an initial phase of mistrust and fear, are beginning to appreciate and enhance this contribution which has significant margins for growth. In this regard, we also note a step forward in terms of networking between associations, precisely to better achieve this function of stimulus and complementary intervention to the responses of the public service. Also because the activism of the associations can today find greater vigor and incisiveness of proposal in mental health councils, provided that discussion and cohesion between them grows and a constructive alliance is established with the other members and managers of mental health services . These services, as well as mental health, are considered "common goods" to be safeguarded and improved continuously and with determination. For this reason, the leaders of the associations view with particular concern the current problems of the CSM which have a heavy impact on users and families. They grasp critical aspects which also concern some of their operating methods. In particular, they reiterate the belief that one cannot think of treating a patient without also involving the family which is their natural context of life. They believe that services should pay more attention to the primary care unit as an active resource in patient care. A step forward in this sense is the spread everywhere of multifamily groups from which, not surprisingly, some associations and some of their initiatives originated. They believe that for services, being able to count on a collaborative family, understood as an active resource, is a guarantee of greater effectiveness of the interventions. Just as it is important for the patient to be because if he does not find the resources within himself he remains entangled in his disorder. It is therefore necessary for operators to help the patient along this path of self-recovery in the direction of recovery.
Tab. 11. How family associations change
Source: 2016 survey, Don Luigi Di Liegro International Foundation
Recovery is a desirable process for all patients, even the most serious, and on which converges, with some distinctions, the attention of the various "witnesses" interviewed in the research who clarified its language and meaning, boasting continuity with the paradigm of reformed psychiatry of our country. In particular, it is a concept emblematically represented by some phrases collected from patient testimonies9 which also explain the conditions necessary for the successful implementation of this process of which they are protagonists with the conscious participation of the operators.
“You don't know how pleased I was to understand that you were interested in me not only as a patient but also as a person”
First of all, it is necessary for operators to have an attitude that is favorable to considering the patient a person and not a symptom or a case to be treated and therefore to recognize him as having equal dignity, which establishes a therapeutic alliance.
“What actually helped me was feeling taken seriously”
A second element that helps a patient to recover is feeling the trust of the operator, who therefore believes in him and therefore supports his motivation, encourages and urges his progress.
“Why don't you ever ask me what I do to help myself?”
The patient who is included in a recovery process understands that he must be the protagonist of his own recovery. He therefore has the expectation that the operator will take care of him, soliciting the maximum investment of his potential and resources so as to gradually be able to meet the needs of his life in a more autonomous and self-determined way.
“The whole health thing has been a very difficult experience, because I really had to rebuild myself as a person”
Ultimately the recovery process ends in the reconstruction of oneself as a person. This requires the user to make considerable efforts, patience, perseverance over time with the hope of building a better future. All users must be able to be helped to rediscover potential and carry out projects that give meaning to their lives and that allow them to experience successes, even modest ones, that fuel this challenge. For mental health services this means not limiting themselves to “essential levels of care” but promoting “essential levels of citizenship”.
In conclusion, the research allowed us to delve deeper into the crucial elements of knowledge about the phenomenon, as was the researchers' expectations, to make a contribution to reflection and facilitate change. A change which, for the mental health services system in Rome, appears necessary starting from the recovery of human resources, a crucial factor in the relational practice of psychiatry. The data that emerges with absolute clarity from the interviews with the various targets of the research is the insufficient supply of personnel, both overall and, in particular, of psychologists, social workers and rehabilitation therapists. The lack of turnover of operators for over ten years is causing a series of problems in the services, perceived by all those interviewed, both in terms of prevention and care and rehabilitation of users. We are at the "point of no return" with respect to an acceptable quality of services and probably the survival of many of them. The Lazio Region seems to have no alternatives with respect to an urgent use of new and adequate human resources and courageous choices that further enhance the centrality of the territory with respect to the places of hospitalization (more guaranteed by standards and resources) and which also attribute greater responsibilities to the DSMs in spending planning and management. The risk is that decades of good territorial psychiatry in the post-Basaglia era, including prevention practices, home-based activities and rehabilitation in the area, will be lost with operators who leave the services after reaching age limits without being able to transfer their know-how to new recruits and therefore guarantee the continuity of services. Innovative operators and some successful experiments are no longer enough to support the sector, due to the fact that almost every phenomenological aspect covered by the research seems to have a negative impact on the impoverishment of human resources with the related knowledge, and this also prevents us from connecting the limits and deficiencies of the services of mental health to causes intrinsic to the service system and the culture of the practices themselves. Even if the merging of local health authorities will allow, in the medium to long term, the standardization of services and pathways and the generalization of good practices, it can hardly contribute to optimizing the resources currently available and therefore improving the territorial standards of assistance.
The research promoted by the Don Luigi Di Liegro International Foundation and the Fondation d'Harcourt, which since their inception have invested energy and resources in the field of mental health with multiple initiatives, had the aim of achieving three concrete objectives in the metropolitan area.
READ THE SUMMARY OF THE RESEARCH
The first is to draw the attention of citizens and institutions to the issue of mental health in a phase of real difficulty for the entire service sector called to promote and protect it, for two main reasons. The first refers to the long season of national spending review policies that did not spare the welfare system, a season replicated and aggravated in the Lazio context by the plan to reduce the Region's deficits in healthcare. This has particularly penalized a sector such as mental health, whose production factor is essentially made up of human resources. The second reason consists in the merging and reorganization of the local health authorities, on the basis of a national strategic orientation which adds complexity and requires adaptation to an institutional-organizational reorganization of healthcare which also occurred in configuring a new and larger Department of Mental Health. In the hope that the phase of recovery from the deficit and the transition of the system will be completed as soon as possible, it is necessary to face this challenge not only with concerned attention but also trying to seize the opportunities.
In addition to turning the spotlight on mental health in the metropolitan context, the research has a peculiarly cognitive objective, an objective necessary to cover a gap in research on the sector in the metropolitan context. The research follows rigorous method parameters and is carried out with multiple data collection tools, from structured questionnaires to question grids for qualitative interviews. The investigation, which involved all 5 former ASLs - namely the newly created ASL ROMA 1, 2 and 3 - examined the needs of users and their families and analyzed their relationships with mental health services , verified operational processes and collected evaluation elements of the service offering with their critical issues and innovations, strengths and weaknesses, in the awareness that a more in-depth knowledge of the phenomenon helps reflection and therefore change. The research design involves all the actors or stakeholders in the sector, users, family members, operators and managers, family associations and volunteers, representatives of mental health consultancies. Mental health cannot help but enhance and integrate the different components and converging resources - including those of the Municipality and Municipalities - as the title of this research recalls: "Networks of care and mental distress: research path for an Observatory in Rome".
Extension of the deadlines for submitting applications, new deadline 8 July 2016 at 2pm.
Read the civil service project presented by the DON LUIGI DI LIEGRO ONLUS INTERNATIONAL FOUNDATION and included in the notice for the selection of 978 volunteers to be employed in national civil service projects in Lazio.
Young people can apply:
between 18 and 28 years not exceeded (28 years and 364 days);
Italian citizens;
citizens of other European Union countries;
non-EU citizens regularly residing.
The application must be received by 30 June 2016 at 2.00 pm.
We also remind you that you can:
send it by registered mail with return receipt to the address of the headquarters of FONDAZIONE INTERNAZIONALE DON LUIGI DI LIEGRO ONLUS in Via Ostiense 106 – 00154 Rome (THE POSTAL MARK IS NOT AUTHENTIC);
send it via Certified Electronic Mail (PEC) owned by the person interested in the email servicecivile@pec.fondazionediliegro.com taking care to attach all documentation in PDF format;
deliver it by hand to the headquarters of the DON LUIGI DI LIEGRO ONLUS INTERNATIONAL FOUNDATION, Via Ostiense, 106 – 00154 ROME:
The application must include:
If you have any doubts or would like clarification, you can contact the contact persons on 06.6792669 – 0693572111 or write to serviziocivile@fondazionediliegro.com
Venerdì 27 e sabato 28 gennaio, presso l’Università Gregoriana (Piazza della Pilotta 4 - Roma), si è tenuto il convegno “Riprendersi: i fattori determinanti della salute mentale”, organizzato dalla Fondazione Internazionale Don Luigi Di Liegro e dalla Fondation d’Harcourt, in collaborazione con l’INMP Istituto Nazionale per la promozione della salute delle popolazioni Migranti ed il contrasto delle malattie della Povertà.
Il convegno, rivolto a medici, infermieri, psicologi, tecnici della riabilitazione psichiatrica, educatori professionali, assistenti sanitari e terapisti occupazionali, propone di mettere a fuoco l’efficacia, i limiti e le prospettive dell’approccio biomedico in salute mentale e al tempo stesso di evidenziare il ruolo determinante dei fattori personali e sociali connessi al paradigma della cosiddetta recovery.
Dagli anni ’60 del secolo scorso ad oggi sono intervenuti importanti cambiamenti nel settore della salute mentale: dal superamento del manicomio alla riorganizzazione dipartimentale dei servizi di salute mentale, dalla disponibilità di farmaci specifici ai nuovi interventi in campo terapeutico e della riabilitazione sociale. Tuttavia gli studi epidemiologici dimostrano che la prognosi delle malattie mentali gravi, che rappresentano oggi una delle maggiori cause di disabilità a livello mondiale, non è migliorata come si sperava.
L’approccio biomedico, per quanto importante deve tener conto e integrarsi con i determinanti “non tecnici” nell’evoluzione a lungo termine dei disturbi mentali, soprattutto per ciò che riguarda le patologie più gravi: il contesto sociale di vita dei malati e le risorse in esso disponibili e da attivare, la valorizzazione del sapere esperienziale di pazienti e familiari, la responsività dei servizi di salute mentale riguardo alla complessità dei bisogni degli utenti, secondo una visione olistica della persona e la fiducia nelle sue potenzialità, oltre la malattia. Questa prospettiva è confermata dagli studi sulla patogenesi della schizofrenia, che evidenziano come il core del disturbo sia rappresentato dalle disfunzioni cognitive e affettive, per le quali non disponiamo di trattamenti farmacologici e che configurano la schizofrenia come un disturbo della socialità. L’INMP - ente pubblico del Sistema sanitario nazionale afferente al Ministero della Salute, attivo negli ambulatori di Roma in favore delle persone migranti e italiane con bisogni di tipo sociosanitario, anche portatrici di disagio psichico, è centro di riferimento della Rete nazionale per le problematiche di assistenza in campo socio sanitario legate alle popolazioni migranti e alla povertà - ha recentemente siglato un accordo di collaborazione con la Fondazione Internazionale Don Luigi Di Liegro. La Fondazione, che tra le proprie finalità attua percorsi terapeutici e la diffusione di una maggiore comprensione del problema del disagio psichico, attraverso il proprio personale, realizzerà attività di volontariato a favore degli utenti dei servizi medici, psicologici e sociosanitari del poliambulatorio INMP, con particolare riferimento alle persone con disagio psichico e marginalità sociale.
E’ fondamentale aprire spazi di riflessione e di formazione, come questo evento, sui temi più attuali della salute mentale in relazione alle politiche nazionali e alla luce dei suoi nuovi paradigmi come, per esempio, l’esclusione delle persone con disturbi psichici, persone fra le più vulnerabili della nostra società, al di là del gruppo sociale di appartenenza, e i loro diritti all’inclusione e all’accesso alle cure - umane, eticamente accettabili, adattate culturalmente e costo-efficaci. Vista la complessità della salute mentale, le risorse insufficienti a coprire i notevoli bisogni, e la necessità di garantire una presa in carico di alta qualità, è importante creare reti, definire strategie e alleanze interdisciplinari e intersettoriali, anche tra soggetti pubblici e privati, collegando conoscenze scientifiche, empiriche ed etiche, per ottimizzare le scarse risorse e offrire alle persone affette da problemi psichici la più ampia possibilità di accesso alle cure di eccellenza, anche attraverso una presa in carico sociosanitaria continua. In questo contesto si colloca l’accordo tra l’INMP e la Fondazione Internazionale Don Luigi Di Liegro, perché insieme si possa offrire cura e supporto ottimali alle persone con problemi mentali, consapevoli della ricaduta positiva che questo ha, non solo sulla salute e il benessere sull’individuo, ma anche su quello di tutta la collettività.
A service specifically aimed at family members of people with mental health problems is that of coordination and support of groups of family members who come into contact with the Foundation and ask for a training and support to deal with the situation in the family environment. Strengthening this environment means providing indirect help to the suffering person.
For this reason, the Foundation promotes "self-help groups" aimed at family members and all those who have a direct relationship with people with mental health problems.
The goal of the groups is to build a support network capable of welcoming everyone's experience, giving support and strengthening resources.
The groups are entirely managed by family members and are held on a weekly basis, with a meeting scheduled once a month supervision by professionals (psychiatrists, psychologists).
