First of all I would like to thank the International Nurses Specialist Group and Su Madge for offering the Italian CF nurses the opportunity to be here today at this European Conference and speak of their experiences. In the second place, I would like to apologize for my lack of familiarity with spoken English: I will try to do my best! I would like to briefly illustrate how assistance for CF patients has been conceived in Italy, the role of the nurse within the Public Health Service and what Cystic Fibrosis nurses specifically do.

The assistance for CF patients, in Italy, has its origin in the Hospital of Verona where exactly 40 years ago, Prof. Gianni Mastella began to take care of children affected by this till then almost unknown illness, and which for almost twenty years was the only place, together with a few others, where CF was treated and studied. Other CF centers have begun to operate in other cities in Italy since the Eighties, thanks also of the activity of consciousness raising and training undertaken in Verona, which is currently the largest Center on the continent, as for number of patients.
Since 1993 a specific Law has regulated the treatment and care of people affected by CF. The law establishes that in each of the twenty regions of Italy, the national health service  must set up at least one center charged of a neonatal screening program and of diagnosis, treatment, care and rehabilitation of CF patients; it further states that people with CF are entitled to receive, completely free of any charge, all kinds of treatment, drugs, medical care and equipment they need. I think it is safe to say that this law is among the most specific and protective of any in the world. It is the product of a definite philosophy of care on which Prof. Mastella insisted from the very beginning, that consists of a holistic approach to the CF patient and pursues the ideal of an assistance that takes care of the patient globally, from all points of view: not only from the clinical standpoint but also from the rehabilitative, psychological, social, scholastic, employment, economic and reproductive viewpoints.
In this view, the CF center is conceived as a reference point for every type of need of the patient due to his pathology. 

Currently in Italy (56 million inhabitants on 300,000 sq.km.) there are 20 regional CF centers plus 14 minor centers; the patients are about 4,100, one third of whom are adults. Two centers (Verona and Rome) are structured both for day care and have their own inpatient ward. The others provide day care and, when hospitalization is needed, make use of pediatrics, pneumology or general medicine wards of the hospital they are a part of. Only three regions have separate centers for adults and children.

What is the nurse's role in the italian Public HS ?
For a long time, our profession was relegated in Italy to an "ancillary" role with respect to the physician: the very law that defined and regulated our profession called it an "auxiliary" of the medical one.
Over the years, Italian nurses have achieved, in the daily exercise of their profession, a high level of skill, authority and autonomy so it became clear that the marginal role they had in the national health system underrated and penalized them.  So, in the last decade, things have changed: new laws no longer define the nurses "by exclusion", as it was before, through a list of the task they were allowed to perform, but outline a fully entitled health profession endowed with its own wide sphere of autonomy and with its exclusive competences   
Therefore nurses now have an autonomous organizational structure and occupy positions of responsibility and management in the national health service.
Also the training programs, formerly taught in outmoded professional schools run by the Health Ministry, have radically changed, passing to the Universities: currently, there are an University Diploma in Nursing that can be obtained after a three-year course and allows the holder to practice the profession - and a Degree in Nursing Sciences that can be obtained after a five-year university course and qualifies for managerial and teaching functions (in both cases a previous 13 years cursus studiorum is requested). Postgraduate Courses have not been developed yet, so the specialization in specific sectors of care is acquired "in the field" with clinical practice, or through courses created by local health care authorities.
So, we can say that in the last ten years, the role of the nurse in Italy has changed in a highly positive way, with an increase in responsibility, recognition of full autonomy of action, the disappearance of a position of "submission" to the medical profession, recognition of specific, exclusive functions. 
This is the context in which the Italian CF nurses operate; they are about 200, and of these about 60 deal exclusively with CF patients. Their specific training in this field has been always handled by the CF Center of Verona. Almost all the nurses who care exclusively for CF patients, and many of those who partially care for them have been trained or have performed internships in Verona, that can thus be considered our school of specialization in the nursing care of cystic fibrosis.
The number of nurses who work in each center differs from just one to as many as 20 elements, where also an inpatient ward is present; but even though the role of the nurse in the staff of the center may vary, all have the common background of a period of training at the Verona center, and have assimilated its philosophy of "caring for the patient globally'', of which I spoke previously. Thanks to this, in spite of the distance from one center to another, and in spite of the difficulty of maintaining contacts and exchanging information among the different nursing staffs, there is, among Italian CF nurses, a general uniformity of attitude and behavior, that we could almost call a common nursing style.

The changes undergone by our profession in the last decade have had positive repercussions also on the role of the nurse in the CF center, where they have become full-fledged members of the staff with an irreplaceable, authoritative role and specific, important duties in the "global care" of the CF patient: generally they have a great deal of responsibility to make decisions based on their own judgment, with a broad margin of discretion and autonomy.
I won't be able, due to the shortage of time, to describe our role within the CF center in all the details. I would like, however, to underline some of more interesting aspects of our work.
To begin with, it is usually a member of the nursing staff who is in charge of the general organization of the center, is responsible for the proper performance of the service and supervises the quality of the care offered and maintenance of the established standard.
So, for example, very important is the nurses' role from the organizational viewpoint, (as we can see from this list of tasks), and also as regards logistic and administrative aspects the nursing staff has usually great responsibilities.
In the clinical evaluation of the patients the nurses staff takes similarly a relevant part. First of all, in fact, the nurse usually performs the assessment of the patient and the family in order to determine their care needs, which are then presented during the case discussion meetings and evaluated by the whole staff for decisions.
Then the nurse prepares patients for the medical examination, personally performing the auxological and oxymetrical records and noting vital signs, performing spirometrical tests, blood tests and throat swabs.

As for treatment, nurses autonomously manage the ev therapy with full decisional power on the type of peripheral venous catheter, point of insertion, etc. It is noticeable that in some Centers nurses have for some time undertaken the practice of positioning Midline type PICC.

An irreplaceable function of nurses in the Center is teaching and training of patients about performing their own home treatments. They are especially in charge of patients instruction about:
-Aerosol therapy  -Oxygen therapy -Artificial enteral nutrition -EV therapy
About all four of these kind of issues  is a duty of the nurse to identify within the family the figure to rely on, to explain the correct use and maintenance of the equipment and the rules of hygiene to follow, to verify periodically the skills, to test the patients and/or their families to ascertain that they have properly assimilated the techniques and to assess the level of compliance. 
In addition, the nurse provides telephone consultation about all of these treatments, whenever the patient needs clarification of some point or has problems he is unable to solve by himself.
As for ev therapy, almost all the Italian centers have adopted the policy of encouraging, as much as possible, the management of cycles of ev antibiotic therapy by the patients autonomously at their own home. This makes our role particularly sensitive, especially when a central venous catheter is used.

Control of infections is an aspect of growing importance in the CF center's activity for which the Italian nurses are taking direct responsibility: They are taking charge, to a large extent, of establishing the protocols with the rules and measures for the prevention of cross-infection among patients, and of watching over the observance of such rules.
The advocacy in favor of the patient and their family: is another of the roles that the nurse has always carried out in the Italian CF centers. It is perhaps the most exclusive and the one we are proudest of. Thanks to the special relationship we have with the patients, less formal, more direct, confidential and freer, we can act as go-betweens for them with the doctors, for needs not perceived or not expressed, for problems not reported or underestimated, for explanations not requested and questions not asked. It is an important function to ensure the best care of our patients.   

Telephone triage: in more and more centers the physicians depend on the nurses to filter phone calls from patients requesting consultation. It is a necessity due to the growing workload (an average of 5% more every year) but also a way to make more efficient use of limited resources and thus to improve the service offered. In the Tuscan cystic fibrosis center where I work, about 25% of the telephone calls coming from patients are handled by the nurses without the need for a doctor to take the phone.

In some centers the nurses are in charge of performing the sweat tests and handling communications with the families of infants positive to neonatal screening programs; in these cases, it is the nurse who habitually has the delicate task of providing the parents with information about the significance of the screening.

It is frequent that CF centers have to deal with a real lack of personnel. The nurse often has to fill in and perform tasks that are normally done by other professionals and to be a real jack-of-all-trades. It is not unusual for the nurses to act, in many Italian CF centers, as social workers, physiotherapists and sometimes even dieticians.

Yet, there are two aspects in which we still have a lot to do: home care and palliative treatments:
Home care is, in some respects, our weak point. In our country, a dominating culture on health care, considered the hospital the only possible site of treatment. This was abetted by the persistent popular perception of disease as something to be ashamed of and to keep hidden, as far as possible away from home, so as not to be "found out". This mentality is now gradually disappearing, but as a result, home nursing service is a culturally recent development and in some parts of Italy it is still not fully operational.
Also, where it does exist, it is never hospital-based and often operates too independently from the hospital structures. The Italian CF centers, as they are all part of hospital structures, do not have their own home care services. So, when a patient or a family is evaluated as not able to receive training for self-management of therapy at home, the CF centers' nurses must delegate the home treatment to the outer domiciliary nurse service but unfortunately there is rarely an effective relationship based on collaboration and home care to CF patients is usually provided by nurses who have no specific training in the field of cystic fibrosis, but are used to dealing mainly with cancer or AIDS patients. We have to work on this issue!.

Terminal and palliative treatment and pain therapy: in Italy we are lagging far behind, also because of a deeply rooted, popular idea, that considers suffering as something that cannot, and therefore should not, be completely eradicated. But more and more hospitals are setting up Units for palliative care and pain treatment and the nurses are the professionals most often in charge of this problem in the CF centers: we are trying to enhance the awareness of other operators as to the importance of assessment and treatment of pain and of an adequate management of the terminal phase. 

More and more often, finally, nurses are an active part of the research programs carried out in the center. They more often participate in the collection and processing of data. Unimaginable just a few years ago!

In spite of our role, it is very difficult for Italian nurses to update their skills, learn more and specialize: the national health service provides all the public hospitals with funds for personnel updating, but it is almost impossible for nurses to gain access to them, as almost all the funds are usually destined for updating doctors. Access to forms of sponsorship by commercial companies is quite impossible thanks to a law that effectively discourages the latter from subsidizing health operators other than physicians.   

At the last Italian Cystic Fibrosis Conference, in december 2000, for the first time a nursing session was held.
On that occasion, we created the Italian CF Nurses Group (GIIFC). The aims of our Group are:
to promote the exchange of ideas, knowledge and information among the nurses operating in the CF Centers, overcoming the barriers caused by geographical distance. 
to pursue uniformity in nursing practice through the development of protocols and common guidelines
to promote nursing research in the field of cystic fibrosis
As regards the first point, we have set up a website of CF nurses (www.infermieri-fc.net) that will receive contributions from all the nurses and will also make available a bibliography on nursing care of CF patients, so as to share and spread the knowledge to all the nurses operating in the sector. With the same purpose, we have also set up an on-line discussion forum through which nurses can communicate with each other, share information and compare experiences.
As regards the second point, we have created two working groups that will carry out a preparatory stage with the goal of enabling us to draw up guidelines on two specific  issues: measures for the control of infection within the CF center and management of central and peripheral venous access.
Finally, as regards the last point, the GIIFC has promoted and undertaken a national study, the first carried out in Italy exclusively by nurses, to determine how important painful symptoms are in adult CF patients and how much they affect the quality of their life. We examined a sampling of about 15% of the adult CF population in Italy. The results of the first phase will be presented in this afternoon's session.