Portal de Totana
www.portaldetotana.com
The mayor of Totana, Juan José Cánovas, has raised a motion to the November plenary session urging the Ministry of Health of the Autonomous Community of Murcia that Pediatric Palliative Care in Rare Diseases should be 24 hours of 365 days a year, And led by pediatric practitioners along with the rest of the palliative care team.
In addition, the proposal calls for the Pediatric Palliative Care and Home Hospitalization Unit to be given the human and material resources necessary to guarantee palliative care 365 days a year and 24 hours.
Similarly, it is requested that the Ministry of Health of the Region of Murcia proceed to update and implement the Regional Plan for Palliative Care contemplated in the health plan of the Region of Murcia 2009-2015.
It is also requested that in the legal term, the associations and organizations involved be informed about the deadline for administrative silence to be resolved, and any possible precautionary measures that could be taken, if any, in order to avoid difficult And impossible reparation for children undergoing palliative care and their families in our Region.
Historic context
Since January 2016 the Association of Rare Diseases D'Genes participates in the pediatric palliative care program of the Region of Murcia, in collaboration with the Pediatric Hospice and Home Hospitalization Unit of the Virgen de la Arrixaca University Clinical Hospital and the Association of Relatives of children with cancer in the region of Murcia AFACMUR.
The D'Genes Association has been making available to the program a psychologist and a social worker 365 days a year to provide care, support and support to the cases identified in the pediatric palliative care program in rare diseases.
Since June 2016, the Unit of Home Hospitalization and Pediatric Palliative Care of the Region of Murcia has 6 professionals;
3 doctors and 3 nurses.
These professionals take care of all the patients who need pediatric palliative care in the Region, from 8 am to 9 pm Monday through Friday and during the weekends, from 8 am to 9 pm, only for nursing problems.
In the Region of Murcia there are approximately 190 children who need pediatric palliative care a year.
Of these, approximately 60 children per year will need specific palliative care, in a home hospitalization regime.
During the 3 years of operation of the palliative care unit of the Region of Murcia, has been attended to more than 50 children and their families.
Out-of-hours care has been carried out in an altruistic way, noting that a large part of "urgent" calls and deaths (more than 65%) occur outside these hours, either at night or during the weekend .
In addition, since June 2016, we have been working on a continuity of care at the hands of the emergency services, after receiving training courses, but in the implementation of the same, several weaknesses have been identified for this continuity of care to be carried out .
The national strategy "Pediatric palliative care in the national health system: Care criteria" specifies that all the autonomous communities must have at least one reference pediatric palliative care unit, made up of specialized Pediatric staff and provide care 24 hours at least by telephone by such staff.
Although also it is exposed that the ideal would be telephone and face-to-face attention.
The children's rights charter specifies that the child has to be cared for by a pediatric specialist at all stages of life, including death.
The Health Plan of the Region of Murcia specifies that a better quality of life should be ensured for patients and their families, through palliative care and psychosocial support.
The portfolio of services of the National Health System states that palliative care should be offered to the terminally ill in an integral, individualized and coordinated way, as well as to the people linked to them.
This specially humanized and personalized care should be provided at the patient's home.
Care can be given at the patient's home or internment.
The service portfolio of the Murciano Health Service involves as an inclusion criterion the cases of people in the whole population in terminal situation, and it brings health care to the patient and the family.
Source: Ayuntamiento de Totana
Privacy policy
- Legal notice
- Cookies