“When you feel so bad you cannot be alone with yourself, with your ghosts, not even at night. Today I am sailing in the dark, I am afraid, I feel I have lost certainties in my path of treatment”. Alessia is 40 years old and, as she tells time.news Salute about her daily war with eating disorders, her tears stream down her cheeks. You suffer from anorexia nervosa and bulimia attacks. “Through phases of fasting that knock me down, and phases of big binges in which I eat and vomit, eat and vomit. Very little is said about it, but you must understand that this is a disease.” And in the acute phase she “she doesn’t care at home”, she sighs on the phone.
Today he is waiting for a bed in the community. “The first available? July 2023. A year is very long. And my fear is that, in the meantime, with the cut of the beds for the Dca Center of the San Raffaele Ville Turro hospital in Milan, it may become difficult to have a hospitalization in a context that for many of us has been a safe haven. Don’t dismantle a model that works, “he asks. Alessia is not the only one to think so. Patient voices and their appeals are growing. They summarize the issue that worries them as follows: “The number of beds per DCA has dropped from 20 to 5”. The position of the hospital, the only one and repeated several times, is: “We continue to hospitalize in compliance with the waiting list”, only it was decided “to define a different clinical path” which “provides for the management of the acute phase for the metabolic and cardiovascular imbalance in the internist or pediatric wards “, as declared by the health director of San Raffaele Turro, Salvatore Mazzitelli.
The post-acute rehabilitation phase, he continues, “can take place either in day hospital, or alternatively in hospitalization at our psychiatric rehabilitation department in San Raffaele Turro”. But this proposal does not convince patients. “It’s a step backwards”, say some parents of girls who have lived the experience of hospitalization in the previous modality, considering it crucial. “Listen to the patients,” they ask. Patients like Veronica, who says forcefully: “The hospitalization in Ville Turro saved my life”.
She faced him twice, “in November and December 2018 and in July 2019”. Then she was followed in the clinic until May 2022. Today “I am followed privately by a psychiatrist and psychologist – continues Veronica – For my family it is a very big sacrifice”, she reflects. Eating diseases are complex, they affect the mind and the body, “they require multidisciplinary care (psychiatrists, psychologists, dieticians) in specialized and dedicated departments”, underline the patients who would not “want to see the path broken up”. For the most serious cases, hospitalization is foreseen. Then there are the Day hospital and the outpatient clinic. The path to get out is long and tiring. And “all-round help” is needed, say the patients.
On the support received in the Milanese structure, the chorus of voices is unanimous: “I was destroyed by the disease”, there “I found assistance that had never been given to me in the past, competent figures capable of doing their work”, sums up Erika , 22, who took pen and paper after the head of the center, Stefano Erzegovesi, resigned and after learning about the reorganization of the path. “Five beds”, she says, “are a pittance, counting all the people who die every day because of the DCA”. It is true, she adds, “the Mac (complex ambulatory macroactivity, ed.) Has been intensified and the patients with ‘higher’ life risk, pass me the term, come to have assisted meals for both lunch and dinner”. But for Erika it is not enough.
“At Mac – Alessia intervenes – you come in after breakfast, have lunch, stay in the room for some time, take a short relaxation course, have dinner and at 7 pm they send you home. And there my fears begin. Then I can take back, do whatever kind of thing “. Erika began to suffer from anorexia “in elementary school”, she lived “in and out of hospitals like a parcel” for “10 years”, she arrived in high school “destroyed”. You find out about the Dca Center in Ville Turro. “I was desperate, I wanted to get out of the infernal circle” of the disease, “but I didn’t know how to do it,” explains the 22-year-old. In December 2020 the hospitalization, the start of a path, psychotherapy, the Day hospital, a second hospitalization last July. Today, she tells her, “I am able to work away from home, in the kitchen as an assistant cook”, she who has struggled with food for years. “With the help I received I gained independence and freedom”. The fear of her? “The new reorganization of the department seems a palliative”.
The duration of a hospitalization for these pathologies “cannot be predicted in advance, it depends on the physical and above all mental conditions of the patient”, explains those who have been through it. As several studies have shown, then, the Covid pandemic has aggravated the situation of eating disorders with a detonator effect, thanks to the impact of the lockdown, the lives overwhelmed by the virus. According to estimates, the number of requests for help has increased by up to 30-40%. There has often been talk of a pandemic within a pandemic. And more patients than in the past have arrived at the structures with serious situations, hospitalization times have lengthened. And when the need for help grows, so too do the costs for the system.
“But – Erika objects – DCAs are worth as much as other diseases”. Alessia says: “There is not only the eating disorder, those who suffer from it have wider problems”. The organism is weakened, “you are dehydrated, you have problems with heartbeat, kidneys”. In the most difficult phase, the fate of these children hangs by a thread, the families remember. “And if the hospitalization takes place in a non-specialized ward, it is difficult for you to receive complete help – adds Alessia – They give you a drip, an ultrasound. If everything is fine for them, they send you home after a couple of days. . But how can family members manage at home a person who hasn’t eaten a plate of pasta for months? “. Long waits for a job are the problem that is reported by several parents as a “common” general situation “on the national territory”. A girl writes: “After my father died I fell back into a black hole.” And “after 5 months I am still waiting for a hospitalization”.
There are those who describe this experience as a watershed between a before and an after. Anna tells of her experience in the DCA department of San Raffaele Turro. First reaction? “I don’t spend Christmas here even dead,” she recalls. “I didn’t have the slightest intention of giving up, or of changing. Yet it happened.” Anna she says she felt welcomed and listened to, supported and guided. “We hope that the San Raffaele will continue to be a point of reference – concludes Aurora Caporossi, president of the Animenta association – We need time to cure, even a time of hospitalization in some cases. We have seen a cry for help emerge from patients. these diseases you feel very lonely. And it is essential to have specialized support, to know that you can put your child in the hands of those who can help him. It is difficult to understand how to build a bridge. In this phase we need a reality that puts the patient in the foreground, recognizes their suffering and gives the family time to undertake a path dedicated to them too. For this we hope that the dialogue will remain open “.
THE LETTER OF THE LILAC MOVEMENT – “What we heard about the ‘remodeling'” of the department for the treatment of eating disorders (Dca) of the San Raffaele Turro in Milan “has absolutely not convinced us: the substance is and remains that of a full-bodied cut of seats bed and a medical approach focused on symptoms and not on the overall management of foodborne illness “. It is the Lilac Movement’s reply to the explanations given by the management of San Raffaele and the Centro Dca on the occasion of the meeting organized in recent days by the Lombard regional councilor, Simona Tironi. The movement in an open letter had spoken of “the substantial dismantling of what was once a center of excellence for the city of Milan and a point of reference even outside the region”.
And in a new letter he refers to the words of the health director Salvatore Mazzitelli, who in a statement explained that a different clinical path has been defined for patients with eating disorders that allows them to be increasingly adhering to the treatment protocols and consequently more effective in therapy “. Words to which the Lilac Movement replies by asking to “be able to know which treatment protocols the path is concretely inspired by” and “which methods of measurement of greater efficacy have been studied and adopted”. And he specifies the spirit that animates the movement’s action, that of a reality “made up of territorial associations in turn made up of families, patients and former patients who have crossed the tunnel, often resulting in the loss of a child or family member. of the DCAs “. Therefore not a reality that carries “party and / or sectarian interests, as sometimes inappropriately alluded to during the meeting”, he points out.
The goal, the Lilla Movement clarifies in the letter, is “to give a voice to those who expect medical care and services, mostly life-saving, due to a DCA problem”. And for this reason, the patient’s testimonies are attached to the new letter sent to San Raffaele. Like Anna, 20, who talks about her experience during the Covid emergency, when “the beds dedicated to DCs” were “halved and moved to another building”. She is “admitted to a nutritional rehabilitation ward outside the region, a useless and ineffective attempt to help. Away from the doctors who have known and followed me for years and far from the only ward in which I trust”.
Another former patient, Marta, explains that “entering the hospital” saved her. I was able to stop, look at the problem and find a way to deal with it without the stress of everyday life. ” “Sometimes there is a need for a ‘drastic’ intervention, hospitalization, not having distractions and being able to really be treated. It’s been 4 years since my last hospitalization. Now I’m fine, but I often think about the months I spent in the ward, about what they taught me. When I have a moment of difficulty with food, I think back to lunches in silence with the nurses who were watching us and I am grateful to have been cured “. Even a boy, Nicholas, 26, says his “frank and sincere”: “I can say that probably without hospitalization” in the eating disorder department of San Raffaele Turro “I don’t know if I would have made it. reached a point of no return “. In these situations, “complete hospitalization at 360 degrees is needed, in which you are followed throughout the day by a team of expert and trained doctors and nurses”.
Finally, he mentions the difficulties experienced in the lockdown Francesca, speaking of her relapse into anorexia. “My psychiatrist moved instantly: he put me back on the waiting list and literally saved my life. Yes, he saved me physically, but not only. He kept me on the ward for 3 months, and there, in the plus phase. acute of my illness, I was really helped “. In another passage, he touches on the point on which so many concerns are concentrated: “My first hospitalization was made in building E, where the DCA ward was located, and it was completely different from the second. There were tools, adequate means, more space for the various fundamental activities for healing, a different organization of the day. Already during the second hospitalization, the ward had instead been temporarily moved to building G, that of psychiatry. There was no space for activities, there were fewer beds. But I didn’t think the situation could get any worse. “