There are 7423 children with disabilities registered in our republic, of which 119 have palliative status. We find out how palliative care is organized for children with serious illnesses and what kinds of support their parents receive from the state and society.
As Tatiana Tekuchenko, head of the department for the organization of medical care for children and mothers and the support of sanatoriums and resorts of the Ministry of Health of the Republic of Crimea, points out, the development of palliative care in Crimea began in 2016. The first serious step in providing specialized care for children was the organization of 10 palliative care beds at the Republican Clinical Children’s Hospital.
- The first ten beds were located in different departments, work was underway to create a palliative care department, – explains Tatyana Tekuchenko. – On July 18, 2022, a palliative service was opened on the basis of the Republican Children’s Clinical Hospital. They opened, as they say, the whole world in cooperation with the Ministry of Social Protection. The Crimean Hospice helped with the equipment.
Since the opening of the palliative service, 59 young patients have been treated there. In October last year, mobile medical teams started working, providing palliative care at home for another 80 seriously ill children.
“Specialists have been assigned to the districts to take care of these children,” explains Tatyana Tekuchenko. – First of all, they are pediatricians and general practitioners, they are all trained. A routing has been developed to allow local doctors to contact the leading independent palliative care specialist via telemedicine, as well as receive consultations at specialized medical organizations outside Crimea.
According to the Deputy Minister of Labor and Social Protection of the Republic of Crimea, Elena Los, at the level of the Ministry of Social Protection and the Ministry of Health of Crimea, there is comprehensive support for children receiving a palliative status. In turn, the state quickly, efficiently and qualitatively introduces new social support measures for families with such children.
- Forms of employment are growing, – notes Elena Los. – If the child has a full family, where the mother takes care and the father works, the father is entitled to a reduced working day and treatment is possible only with personal consent. The right to additional leave applies. In addition, for a family with a child in a palliative situation, benefits are provided for housing and communal services, and preferential travel is granted for the payment of contributions to major repairs. A very important point is to provide a child with a serious illness with technical means of rehabilitation.
Elena Los recommends that parents of children with disabilities pay special attention to the assignment of palliative status in the event of disease progression. It is very important that the medico-social expertise be informed of this in good time.
“The provision of technical means of medical rehabilitation within the framework of the programs of the Ministry of Health, where ventilators, other means, as well as consumables for them, medical nutrition are issued, is a story,” he notes. -She. – But sometimes additional technical means of rehabilitation are necessary, if they are indicated. And here it is very important that the medical and health examination be informed in a timely manner about the palliative state. All processes of the individual rehabilitation program take place in accelerated mode. It takes no more than three days to review an individual rehabilitation program for a child.
- Is the palliative status of the child for life or is there a chance that the disease will recede?
“Given the possibilities of modern medicine and rehabilitation methods, we can hope that such a chance will arise,” reassures Tatyana Tekuchenko. – The status of disabled person is attributed to a person suffering from a serious chronic illness. But thanks to modern treatment, rehabilitation and provision of HTMC, it can be removed or revised at the age of 18. We hope that such a serious chronic disease as a palliative will also improve.
In turn, Elena Los recalls the importance of early detection and intrauterine tests for the timely diagnosis of a child and the use of specialized treatment.
“There are diseases that only show up at the age of three,” she says. – It is important to start treatment early. Then the child will have a normal life with treatment and medical rehabilitation. Without treatment, rehabilitation and VMP, these children are simply bedridden.
Since the difficult state of health of children is a test for parents, as a result of which families are often destroyed, the educational project “PROparents” was launched in Crimea on the basis of a children’s hospice.
- The task was to carry out such a project that would comprehensively approach the support of parents, – explains Anna Ryzhkova, executive director of the Crimean Children’s Hospice. – On the project site, any parent can register, get training, get help and support. We are not limited to the Crimean resource: there is an opportunity to attract specialists and get answers to individual questions.
