only 18 percent of children with incurable diseases access it – breaking latest news

Palliative care for the pediatric age remains a sacrificed albeit very precious service. To describe for the first time the national state of the art of regional assistance networks for minors affected by incurable diseases and the type of patient the Palliped study, coordinated by Franca Benini, head of the pediatric hospice of the University Hospital of Padua (which is the reference center for the Veneto region of pain therapy and pediatric palliative care), with the support of the Maruzza Foundation, engaged for over twenty years in the promotion of this form of assistance. in seven regions (Marche, Abruzzo, Umbria, Sardinia, Calabria, Molise and Valle d’Aosta), according to the survey (which lasted two years), there are no specific services and in five others there is no regional reference center with the function of coordination and management of the clinical, welfare, social, educational and psychological needs of the child and of support for the family.

Right not to suffer still disregarded

In these situations the more tiring assistance route to organise and the family has to make do for some services, explains Benini. But some progress has been made. In recent years, numerous efforts have been made by the Regions to implement the routes. The taking charge of eligible patients rose from 5% in 2018 to 18% in 2022. However, pediatric palliative care, sanctioned together with that for adults by the law 38 of 2010still remain a disregarded right for many children and adolescents who live with diseases without the possibility of recovery comments the expert. Overall, he specifies, they are 10.800 im minori between 0 and 18 years than every year in Italy d
should have access to specialist, high-intensity palliative caree 30 miles those who need that a intensive swamp.

The nodes of the network

The nodes of the network, according to the provisions of the document on the minimum requirements for the accreditation of palliative care and pain therapy facilities approved by the State-Regions Agreement of 25 July 2012, are: the regional reference centre, the pediatric hospice , the reference hospital ward for the pathology being treated, the home care units, the socio-educational services and the emergency-urgency services. The network must also ensure telephone availability 24 hours a day, seven days a week. LThe study surveyed 19 structures dedicated to palliative care for the pediatric age, distributed in 12 regions and in the two autonomous provinces of Trento and Bolzano. Of these, 74% are public, 21% accredited private and 5% in the third sector. THEIn seven facilities, 24-hour continuity of care is provided (in any care setting), in five limited from 8 to 20, in another three from 8 to 16, in one from 8 to 18 and two do not offer home care. A team dedicated exclusively to this type of treatment is present in only 42% of the structures surveyed.

Not just oncological pathologies

There were 867 patients taken care of as of 23 October 2022. Of these, 90.3% (of which 54.8% male and 45.2% female) do not have an oncological pathology. It is about children with degenerative neuropathies, myopathies, rare metabolic diseases, chromosomal disorders, heart or kidney diseases – Benini clarifies -. All patients who are entitled to benefit from a palliative approach are affected by serious illnesses that put them at risk of life and that require complex and continuous assistance, throughout their lives, due to the progression of the pathology and the serious complications that can cause. About two out of ten children are under 3 years of age, almost three out of ten between 6 and 12 years old and 16.5% are over 16 years old. The incurable disease of a child constitutes a severe existential test for the parents. Among separated or divorced couples (9.8%) almost four out of five split after diagnosis. The mother figure is the one who sacrifices herself most to take care of her child: Although mothers overall they appear to have a higher educational qualification than their fathers, in 90% of cases they are the ones to do caregiver to the sick child and to give up work concludes Benini.

The tour of Italy by the Maruzza Foundation

On May 15, the second party left Maruzza Foundation Pediatric Palliative Care Tour of Italy to sensitize and inform citizens about the high social value of this service and to urge the institutions to implement local networks. More than 40 sporting, scientific, cultural and recreational initiatives will take place, until 18 June, throughout the boot (Who the information).