Núria's hell: eight months of crying for help to save her 13-year-old daughter with anorexia

Santa Coloma de GramenetM. is 13 years old and suffers from severe anorexia. She looks like a 10-year-old girl because she is malnourished: she weighs only 34 kg. In the last eight months she has been admitted twice to the Hospital Sant Joan de Déu and her mother, Núria Busquet, is desperate. She complains that the public health system excludes the girl from receiving the treatment she needs because she is not old enough to be admitted to one of the two public mental health units, where only people over the age of 16 are admitted. Nor can she take advantage of the school insurance that would reduce the costs to access a private clinic, where they do admit children with eating disorders (ED), because this guarantee is limited to students from the third year of ESO. She is still in second grade. Her recovery, says her mother, is at a standstill.

Núria tells ARA that her daughter lives in total helplessness because of her illness and in a limbo of welfare resources. "If it weren't for her age, she would have resources within reach, even if they were scarce. Now I can only spend money I don't have or wait for her to turn 14 so she can be cured. And the latter would be very serious. She's just a child, she hasn't even had her period. How many times does my daughter have to malnourish herself because I can't pay for a private clinic", explains Núria to ARA, who has launched a cry for help on social networks to make her ordeal visible.

For her it is very clear that the treatment that M. would have to receive is a long-term admission, 24 hours a day, with psychological therapy and food. But this therapeutic option, explains the director of the Association Against Anorexia and Bulimia (ACAB), Sara Bujalance, only exists in the public health system for those over 16 years, and there is already a long waiting list. "There are only two units for children and adolescents, the Sant Joan de Déu and Hospital Clínic, which are highly specialized and for the most serious cases. But the system cannot absorb admissions 24 hours a day for more than three months because resources are very limited", says the psychologist. Some minors who leave these units need 24-hour surveillance and stay in half-stay services that are not designed or accessible for children under 16 years of age.

"For the youngest children, we are only offered day hospitals, which operate from 9 am to 3 pm. If she gets worse, I can only go to a short-term centre for a month or a month and a half. Then she is sent back to the day centre. When she leaves, she stops eating again", explains Núria. According to the medical director of the Hospital Sant Joan de Déu, Miquel Pons, the centre that has followed the case, it is normal for families to consider a prolonged admission as a solution, since they are continuously monitored, but he assures that it is always preferable to do an outpatient follow-up, even if the treatment takes longer. "You try to keep them close to the family and only make short admissions if necessary, but not only to not dissociate them from their environment, but because their internment with older girls, who already have chronic behaviors, can make them reproduce habits or imitate them", he says.

Bujalance agrees with him, arguing that especially in such young children it is essential to "modify their daily lives as little as possible" and to involve the family in the treatment. "However, if avoiding admission means referring them to an inefficient health resource that cannot offer the treatment they need, it will have to be reviewed", she admits. In this sense, she denounces that there is a very serious lack of resources that discriminates against mental health. "Early diagnosis and referral are factors of good prognosis and if the community network worked well, there would not be a need for so many admissions", she acknowledges. The psychologist regrets that diagnoses are still made too late. The result: those affected are very seriously ill because they have not been visited or because they do not have a referral point in their area that is sensitive enough to refer them to a specialist quickly enough.

Lack of resources and sensitivity

Núria denounces the neglect of the health system. In August her daughter was practically not eating and she immediately contacted her primary health care centre and the ACAB. They were very scared. It all started last year, when M. told her parents that she wanted to become a vegetarian. They were not surprised: she is a child with a passion for animals. So they took advice and made her a "semi-vegetarian" diet, based on vegetables but still incorporating some meat and fish dishes. It is now that they recognize this request as a warning sign. During lockdown, and with the aim of having students not sit all day at home because of the effects that sedentary lifestyles could have on them, the high school asked them to make some nutritional and exercise plans about their day to day life. "And because she is very competitive and a perfectionist [typical ADD traits], she took it to the extreme", her mother explains.

The family first asked for help on August 5, but it wasn't until October 19, two months later, that they had their first visit at primary health care centre. "They assured us that we had detected the changes very early and that if we got to work we could solve it quickly. But no one gave us any speed", says Núria, "I live in a continuous administrative silence and meanwhile my daughter does not eat. We live with an illness that is a monster and there were days when my desperation led me to call the primary health centre 12 times and the hospital 13 more. Or I chased the psychologists", she explains.

The medical director of the Hospital Sant Joan de Déu assures that "no minor with ADD" is excluded from public health coverage. "There is a common protocol for ED, but it is not a single itinerary: it is applied to different cases depending on the severity and criticality of the child", he says. For example, it is not the same if the child is life-threatening or if she can be controlled at home and by making visits to day hospitals to correct her attitudes at mealtimes. "It is one thing to act on a case-by-case basis and that there are no specific mechanisms for such young girls, but it is another thing to deliberately neglect them. As a doctor and as a parent I can understand the anguish and desperation of a family, but the evidence tells us that it would be counterproductive to place such young girls in a mental health centre," he says. 

Núria admits that she lost her temper at Sant Joan de Déu because she was made to feel guilty for her desperation. "When she is admitted to the hospital she eats because she wants to get out, but when she gets out she stops eating again. It's a vicious circle", she sums up. At that moment, she says, she realised that she would only find answers in private centres, where they ask for 4,000 euros a month. "They tell us that we can count on 80% of the school insurance, which would reduce the monthly fee to 400 or 500 euros, but as it is only for children from the 3rd year of ESO onwards, M. still has no place in it", says Núria. In September she will be able to access it, her parents have already made sure of it with the high school and are talking to different private centres so that when she has the insurance she will be able to get in immediatelly. "But this situation is regrettable, it is a huge shame", she complains.

On the fact that private clinics do offer admission to more than 16 year olds, Pons dissociates himself and says that "they have another therapeutic approach". Bujalance explains that there has been an increase in ACTs and that private centres are absorbing many patients who, in many cases due to omission in the public health system but also because of the collapse, might not have needed to be admitted. "You think that if you had more money you would be well advanced or even cured. The harsh reality is that only families with money can afford this, not us. The ED that is cured is for the rich, we are too poor to have a healthy daughter", laments Núria. This mother assures us that she has no complaints with the professionals, because "they do the most they can do with the resources they are given". Even so, she feels powerless because her daughter has been admitted twice on the verge of death and this "cannot be solved with protein shakes alone". 

Consultations due to lockdown soar

Teenagers are starting to experiment earlier and earlier with ED attitudes, or, in medical jargon, "debut" earlier. Cases are also increasing among children under 14, as in the case of M. During lockdown, between March and June, her parents began to notice "strange reactions", but it was not until the summer when she greatly reduced her food intake. And according to the ACAB this has been a very common pattern: covid and 24-hour home lockdown have dynamited cases that had been controlled or were hidden and have aggravated those already uncovered, but the health collapse has prevented access and has postponed first visits of many people.

The ACAB attended last year 1,694 consultations and calls from relatives and people affected by an ED, twice as many as in 2019, when it attended 847. In addition, consultations by mail increased fivefold: they went from 410 in 2019 to 2,717 in 2020. Interventions in specialized units have also skyrocketed, Pons explains. Admissions and discharges with respect to the pre-pandemic period increased by 60%, and 1,500 more outpatient consultations were made.