Narrative Medicine and the listening to the Multiple Sclerosis care professionals: Interview with Professor Mancardi

It’s a real pleasure for us this month hosting in our journal an interview with Professor Mancardi, President of the Italian Society of Neurology (SIN). Prof. Mancardi has been working for years to disseminate the most innovative research in the field of care and treatment of neurological disorders, including Multiple Sclerosis (MS). Recently, SIN has been collaborating with the Healthcare Area of ISTUD Foundation on a Narrative Medicine research project dedicated to the well-being of health professionals that care and assist patients with MS (SMART Project – MULTIPLE SCLEROSIS: LISTENING TO THE MULTI-PROFESSIONAL REALITIES OF NEUROLOGICAL TEAM). Soon the first results of this project, which we believe will make a significant contribution to orienting the organizational changes of the ongoing care services and guide them towards effective choices for improvement, through the voice of those who daily care for people with multiple sclerosis.

– Professor Mancardi, thank you for your willingness to be here with us. The first question we would like to ask you is the following: Why did the Italian Society of Neurology want to investigate the state of health of the professions that deal with Multiple Sclerosis?

The main reason behind SIN’s interest in the health and well-being of the health professional concerns the neurologist as a profession characterized by many complexities, difficulties, and long-term diseases, which are not always possible to completely care. For this reason, the problem behind this profession often results in feelings of helplessness, frustration that could become “burn out” and difficulty in managing such complex situations. Multiple sclerosis is one of these diseases, which you cannot always completely cure, so sometimes successful stories are there, sometimes stories of failure … you always deal with personal realities, family, social issues… and it is, therefore, possible that the neurologist may also have thoughts and moments of difficulty. For these reasons, the SIN wanted to investigate this type of problem. In addition, MS is a disease for which 20 years ago there was no treatment, while now there are almost 20 different treatments available, which has led to the creation, in the last two decades, of many specialized multiple sclerosis units in Italy; unfortunately, I must say that all this work of creating MS units for patients has been essentially managed by the neurologists themselves, in a self-organized and voluntary manner, with little financial or structural support. We, as representatives of the Italian Society of Neurology, wanted to be aware of the degree of difficulty of our neurological colleagues in dealing with these complex diseases, to understand if there are any problems and to help them.

– The SMART project confirms what is already in the literature, a real risk of burn out especially among the younger classes of neurologists, too often with precarious contracts and particularly exposed to the burden of care. Have you observed this scenario in Italian neurology?

Surely, young people are particularly enthusiastic, they are good doctors, they throw themselves enthusiastically into work but, we have a problem of accommodation so very often younger colleagues may start in a center and go on for a few years as precarious, not considering in the right way about having a permanent job, having a salary, building their own family, making projects, … Unfortunately, and this is not only a problem of neurologists but it can be associated also with many other professions, we very often live on the high ground, on unstable terrain, and certainly this negatively affects their general quality of life. In order to make the system work properly and ensure a more widespread welfare, more stable structures should be created with more staff, rather than young professionals should think much more to their career, but I understand that this is very often not easy, especially for young who often suffer from this type of problem. This could be discussed for the Italian youth in general and not only for neurologists and other kinds of doctors but in general for the country of Italy.

– The centers involved in the project have written parallel charts, according to the methodology of narrative medicine. In your opinion, can the approach of narrative medicine help, be a benefit health professional as well as patients?

Surely, narrative medicine is an approach that can act helping professionals in difficulty and reducing the risk of burn out. Unfortunately, its application too often requires much time, since there are so many patients per doctor and the time available to them is always not enough.  As a result, the doctor is often in the situation to manage their time. Although narrative medicine takes time, there is no doubt that, by showing the social, personal, general aspects of the illness that go well beyond the strictly medical aspect, it is welcome within the daily clinical practice. all the part are interested in devoting to the person, not only as a patient with a certain disease but the problem is we should have more time to apply it.

Further, I believe that it is very important to focus on the most difficult cases, to hold group meetings, to make all the doctors in a given center meet, and also not just the doctors but all the actors in the centre, all those professionals who are very important for the centre itself, such as nurses, who are crucial in the treatment and care of multiple sclerosis, as well as psychologists for those cases in which their activity is necessary,… All professional figures should have periodical meetings to discuss the most important problems they had to face in that period of time. I am sure that this would help professionals a lot to overcome any moments of difficulty. Many centers use this technique, although the question of lack of time may remain even in this case: It is known that we, neurologists have to run all the day and consequently, sometimes there is no time for sharing, it would be very useful to meet and share their experiences.

– As the last question, would you like to leave a suggestion, a message to the young neurologists who are undertaking the professional pathway of treatment and assistance of multiple sclerosis?

To the young neurologists who are approaching the world of Multiple Sclerosis, I would like to say that they are in a much more than a fortunate situation because MS is a disease that, although it cannot be completely cured, can still be tackled; not only that! MS is a very interesting disease for the doctor since there is a lot to do and learn within the specific pathway of disease, so it is an area of great interest for the young neurologist. Therefore, the advice I want to leave them is to work and choose to gain experience in a neurological disease (there are so many interesting neurological diseases, and MS is one of the most interesting). Of course, the clinic, the center where they work, needs to help these young people to train and, above all, to try to guarantee them a job stability, because I believe that this is a very important factor in our society.

I would also like to add that we at Sin, and ISTUD have chosen, thanks to the partnership with Biogen, to address this project focusing specifically on multiple sclerosis, but there are many other diseases causing difficulty, discomfort, need to stop for a second and to reflect on their work in neurology, such as cerebrovascular disease, cognitive impairment, Parkinson’s, SLA, … we do not lack complex diseases! Consequently, our attention is obviously focused on patients and their care, but I think that we must also give the right attention to our employees, our young, to help them and to ensure that they do not lose and discourage themselves in facing the difficulties they could encounter in their work.

Thank you all,

 

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Written by

Researcher at Healthcare Area of ISTUD Foundation. Master degree in Industrial Biotechnology at University of Milano-Bicocca, Post-graduate ‘Scienziati in Azienda’ at ISTUD Foundation. Expert in Medical Writing, especially in areas as the qualitative research and Narrative Medicine. She contributes to research and educational projects with the aim of improving the quality of life and quality of care of patients with chronicle or genetic diseases.

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