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"A madman is not less a musician
than you or myself
only the instrument on which
he plays is a little out of tune"
Welcome to SOS PSICHE! Here there are a lot of informations about us. Our first WWW server for families and made from families started in Europe, september, 1995.
SOS PSICHE is an Italy-wide network of non-profit associations with no political or religious affiliations, made up largely of members of the families of persons with NBDs (neurobiological disorders), and volunteers. The aim of SOS PSICHE is to stimulate the provision of appropriate care for NBD sufferers and their families.
NBDs (often called "mental illnesses") affect about 3 per cent of the population directly. They affect SOS PSICHE members through the personal experience of a close relation. And they affect everyone else because mental health is a collective asset that has to be safeguarded. The costs of poor psychiatric assistance are increasingly - and inevitably - being felt by society in general today. The creation of new facilities would mean treatment could be offered to users, prevention could be carried out, and health service costs could be reduced.
to promote awareness of and respect for NBD sufferers and their families;
to inform and increase the awareness of public opinion, the media, relevant public bodies, local and central government administrators, and mental health professionals;
to improve existing services and stimulate the creation of new ones;
to promote concrete initiatives and projects;
to obtain clearly written, precise national regulations in which public structures, administrators and professionals are directly accountable for mental health;
to obtain efficient day centres for occupational and expressive activities, and sheltered residential rehabilitation structures;
to ensure a fast, dependable response from public mental health services during crises and psychiatric emergencies.
The current state of psychiatric services in Italy is clearly inadequate to requirements. There are about 1400 service centres of which 48 per cent are surgeries (in effect "dispensaries" of medicines); 21 per cent are Servizi ospedalieri per la diagnosi e cura (Hospital Diagnosis and Treatment Services or SOPDC) which are useful only in emergencies and for short stays; and 13 per cent are traditional facilities (asylums, university clinics and nursing homes). Twenty per cent of Italy's local health authorities do not have a Centro di salute mentale (Mental Health Centre or CSM) and forty five per cent of CSMs are significantly below average in resources and efficiency.
There are 87 psychiatric hospitals (asylums) currently functioning in Italy with a total of around 20,000 NBD patients (1995, today mainly closed). The situation is less dramatic in the North, where most of the family-carer associations active in the sector are based, but in Southern and Central Italy the difficulties multiply. Since 1978, when the Italian Parliament passed Act 180, NBD patients have been literally "off-loaded" onto their families while efficient services are non-existent, as statistics for 1995 continue to prove. Families are often powerless and unable to cope with a NBD patient, who can create enormous financial, legal, care and health problems. The houses of many such families have become asylums.
What, then, are these problems, since a lot of misinformation on the subject has been circulated up to now? The media frequently present a picture of social deprivation, and not of true disease, which is contradicted by recent developments in research and the neurological sciences. Mental illnesses are rarely talked about or attempts are made to disguise them as simple psychic disorders, thus helping to create a distorted idea of what is actually a disease - and often a serious one. Act 180 quite rightly abolished asylums as an institution, although its success in this respect was only partial, and set asylum patients free. Many people today maintain that the tragic conditions of many NBD sufferers today depend in large part on a lack of mental health facilities. That is true enough, but it is also true that Act 180 was promoted by the psychiatrists themselves.
Act 180 was passed in a hurry and, as is the case with all acts passed too quickly, it made no real provision for the facilities that would be required or for the new situation that it created. Act 180 centres intervention around the patient's consent, which is often lacking as the organ that has to make the decision to undergo treatment is the organ that itself is ill - the brain. These aspects of mental illness were certainly known to the adherents of Psichiatria Democratica, the association notoriously close to left-wing political movements that denied the existence of mental illness while Act 180 was being debated. NBD sufferers themselves are hardly ever mentioned. Their right to as normal and decent a life as possible is ignored. Only rarely does an article appear on the enormous problems faced by families and by the mentally ill "residents" of Italy's Cardboard Cities, left to roam the streets and fend for themselves. And yet there are psychiatrists who claim that patients should be able to associate freely - as if, except in the case of those few NBD sufferers with mild conditions, they were capable of gathering together and taking care of themselves.
In the total absence of care and services (a healthcare and support deficiency that has been dragging on for 17 years), many patients have become chronic, creating severe problems for themselves and their families. There are no reliable data available to describe this situation except those on the incidence of mental illness: sufferers make up more than 1.5 per cent of the total population. Schizophrenia (the most serious of the mental illnesses) alone accounts for a small army of almost 500,000 individuals, of whom about half are in an extremely distressed psychic - and physical - condition. This is a tragedy that affects at least 7-10 times as many people as suffer from multiple sclerosis. It is, however, a tragedy that no one talks about. No one organizes Telethons (like the multiple sclerosis event) to collect funds and more public interest is aroused by a whale stranded on a beach than by NBDs.
Patients and their families attract the public's attention only on those sad occasions when an NBD sufferer is discovered locked away in a cellar, or commits suicide, or is involved in some other crime. The press in general dedicates very few column inches to families, who often prefer to avoid the public eye and suffer in silence. Feelings of guilt or shame also contribute to undermine solidarity among those who have most to gain from a campaign for better services and facilities. A study by the American family association NAMI has shown that in the United States, where care in the community has proved to be as big a disaster as it is in Italy, thirty-eight per cent of families has suffered aggressive and destructive behaviour in the home more or less frequently.
In 1990, another NAMI study reached the conclusion that 10.6 per cent of the more seriously mentally ill had physically injured other people and a further 12.2 per cent had threatened others. Other studies have shown that 27 per cent of psychiatric patients discharged committed acts of violence in the first four months after leaving hospital. Further, more detailed, study is probably required as this is a very worrying phenomenon for families. Because of behaviour of the kind mentioned above, some families live in their own special hell of terror, anxiety and endlessly recurring difficulties. Some family carers are forced to hide all potential weapons such as knives, or to live under siege behind a locked bedroom door. It is clear that the situation in Italy, with its serious deficiencies, must be similar to or worse than the American experience and that data from the USA may be taken as benchmarks.
Those who are of the opinion that mental illness is a problem that only concerns the families affected are making a serious mistake.
The consequences of denying treatment rebound on society as a whole in an increasingly expensive fashion. Most NBD sufferers live in the community and so the problem of violence will extend beyond the home. The American studies should not lead us to form a picture of mental illness as being inherently life-threatening. The mentally ill are not ipso facto criminals. The studies do serve, however, to highlight the pressing need for facilities for the seriously ill, who are paradoxically also the first victims of the shamefully dramatic state of affairs we have described. For many years, intervention was often directed to abhorrent initiatives, such as the courts built at some American mental health centres for teams of supposedly mentally ill tennis players. Patients continued to sleep under bridges. Similar episodes have occurred in Italy such as the purchase by the Trieste local health authority (noted for its "model" mental health services) of a hotel in Bahamas (700 milions of italian lire) and its lavish conferences for psychiatrists from all over the world. In other parts of the Friuli-Venezia Giulia region, people continue to face serious difficulties because of the lack of even the most basic emergency service.
It should also be said that the denial of treatment has seriously jeopardized the psychiatric condition of a large number of patients, who have become aggressive and potentially dangerous as a result. Such NBD sufferers weigh increasingly heavily on the public purse. The cost of constructing suitable treatment and rehabilitation centres would certainly be lower than that of institutionalizing the persons concerned or of the social cost of care in the community. As well as the potential dangerous to other people, there is also the question of the danger NBD sufferers represent to themselves; that is to say their inability to cope efficiently with the elementary needs of everyday life. At least 25-30 per cent of schizophrenics come into this category, quite apart from those suffering from depression or other conditions that may deteriorate. Given an incidence of 7 per thousand, we may conservatively estimate that 200,000 schizophrenics are currently being cared for at home, with an unstable mental condition, without healthcare supervision and with no guarantee of treatment or rehabilitation. If these critical points are ignored, then Act 180 will continue to be held up as a admirable piece of legislation and the views of family carers, who have to deal with extremely serious situations in solitude, will continue to be marginalized.
Some psychiatrists actually believe that the views of an individual who shares a household with a mental patient are "emotionally altered" and should not be taken into consideration. In short, Act 180 was right in what it removed but wrong in failing to create. It failed to control, finance or verify for many years the situation and how it was developing. In failing to respond to the real needs of patients and families and in failing to carry out the groundwork for its own implementation, Act 180 lost all claim to being a "good" statute. Legislation should not be judged by the worthiness of its intentions or the deserving nature of its subject. It has to be evaluated on the basis of information on the new situation it creates. It is still possible to hear people saying that Act 180 was "a great revolutionary event" and that "you can't have a revolution without casualties" or that "it was a great mass experiment". The depressing reputation that Italy has acquired abroad provides a cogent reply to these appalling, senseless, affirmations, which arrogantly ignore the suffering of patients whose only entitlement is the freedom to die on the streets.
"Abbandono" is as familiar a word to English-speaking psychiatrists as "pizza" or "spaghetti". Dr. F. Torrey, the American author of the best- selling "Surviving Schizophrenia", states that the Italian experiment with care in the community "has been a massive failure". After years of experimentation, no one has dared to repeat the Italian legislation or anti-psychiatric model, despite the fact that since 1980 power has changed hands many times all over Europe. All this should lead us to reflect and conclude that society has to take responsibility for a weak and vulnerable group of citizens. SOS PSICHE is campaigning for urgently needed emergency psychiatric services, sheltered residential units and rehabilitation facilities as well as carefully drafted legislation that places clearly defined responsibilities on professionals and politicians, who often hide behind the emotional response of family carers or play down the seriousness of mental illness to cover up a failure to take action.
FAMILIES NEED AN INDIPENDENT AUTHORITY FOR THE MOST SERIOUS PERSONAL AND FAMILY PROBLEMS OF THE MENTALLY ILL - see our proposal issued to the 3rd Gamian-Europe Convention