News

The article about our colleagues from "City Specialized House of Child № 1" Odessa "

The Constitution of Ukraine says a lot about decent life and nothing about the worthy process of dying and death. In the minds of officials mortality - statistics. In the minds of medical staff - the data for which you need to report. At this time, palliative patients in the last stage of life remain with their incurable diseases one by one. If there is no positive prognosis for treatment, then from the hospitals they are sent home - and in fact write down to relatives to die.

 In Ukraine, with the financial support of the EU, a project is being implemented to protect the rights of children in need of palliative care. In seven Ukrainian cities, 7 centers of legal support started work, which will help hard-sick children and their parents. Call for help in your city:таблиця

The law does not anesthetize

The film was created with the support of MF Vidrodzhennya by the NGO Institute for Legal Studies and Strategies for the World Palliative Care Day.

Journalist Margarita Tulup writes about why the state of Ukraine does not want to notice palliative patients: too complex patients.

https://www.opendemocracy.net/od-russia/margarita-tulup/nevidimye-ludi

We saw how hospital clowns work. This movement abroad has been developing for a long time. And I am very glad that we have this movement too. To help with kindness, a smile and recharge with optimism. Who are they and how much is this subtle and important work - in the article by Margarita Tulup:.

 

https://lb.ua/society/2018/05/10/397273_likar_kloun_.html

"Priceless moment of a child's life"

In 2013, Ukraine approved major changes in legislation designed to facilitate access to narcotic painkillers for seriously ill patients. Now in the country one of the most progressive legislations in this field in Europe: you can anaesthetize patients regardless of the diagnosis, age and place of residence through a family doctor without special commissions. Despite this, only 15% of all needy can live without pain. Why laws were not enough to not have to endure, in an interview with the manager of the program initiative "Public Health" of the Foundation "Vidrodzhennia" Ksenia Shapoval:

https://lb.ua/society/2018/03/13/392319_zakon_obezbolivaet.html

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Dear friends!

We remind you that registration for the 4th Congress on Child Palliative Care, which will take place in Rome from 24 to 27 October 2018, continues. Registration is open until October 14, 2018.
More information on the Maruzza Foundation website

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Dear Colleagues!

The Ukrainian Association of Pediatric Palliative Care asks you to take part in the collection of information on existing services in Ukraine for the provision of children's palliative care. Share information about organizations known to you, based on it, we can make a map of services in Ukraine for parents, health workers and volunteers. Let's systematize information on what services are now available to families. We will be grateful for the answers, and for distributing this questionnaire: https://goo.gl/p3iRPn (link access)

Please list all organizations known to you in the questionnaire, even if you do not have full information about them.

Deadline for completing the application form is August 27, 2018.
The summary information will be published on September 10, 2018.

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"99% of the boarders and educators believe that " they are the system ". When you start criticizing the system, they think you are criticizing them, but the boarding system is not able to give the child what it needs, Roman believes." For me the sun It is a sun.Night is a night.Child has to be brought up in a family or a family environment.I do not understand why a child should be at a boarding school "   read the article

Time to save. The history of the doctor who headed
the house of the child and completely changed it

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Dear colleagues!


A round table on "Palliative care for children. Ensuring the rights of children in need of palliative care " will be held in Sumy city.
Purpose of the event: discussion of the issues of provision of palliative care to children under the age of 18 who live in their homes and families who are in difficult living conditions due to illness of the child - how the cooperation of social services and health facilities can help these families?
Target audience: social workers of the territorial centers of social assistance to the population, specialists of city, district Children's Services and Centers of Social Services for Family, Children and Youth, medical workers, representatives of public and voluntary organizations involved in the assistance to patients with palliative care.
Date of the event - October 22, 2018, beginning at 11-00.
The venue is the Sumy geriatric boarding house for veterans of war and labor
(Sumy, 20, Kovpak Street)
The event will be held within the framework of the project "Protecting the rights of children in need of palliative care" with the support of the Charitable Organization "Network of 100 percent of life Rivne" and the European Union and with the support of the Ministry of Social Policy of Ukraine.

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Dear colleagues!
A roundtable on "Palliative care for children will be held in Zhytomyr. Ensuring the rights of children in need of palliative care "
Purpose of the event: discussion of the issues of providing palliative care to children under the age of 18 who live in their homes and families who are in difficult living conditions due to illness of the child - how cooperation between social services and health facilities can help these families?
Target audience: social workers of the territorial centers of social assistance to the population, specialists of city, district Children's Services and Centers of Social Services for Family, Children and Youth, medical workers, representatives of public and voluntary organizations involved in the assistance to patients with palliative care.

Date of the event - November 28, 2018, beginning at 11-30.
Venue - Zhytomyr, SP Square, 1, IV square on the premises of the regional state administration
We invite everyone to join the discussion.
The event will be held within the framework of the project "Protecting the rights of children in need of palliative care" with the support of the Charitable Organization "Network of 100 percent of life in Rivne" and the European Union and with the support of the Ministry of Social Policy of Ukraine.

On December 21, at 11:00, the Association will hold a Round Table with representatives of social services in Vinnytsia and the region on the topic “Palliative care for children. Securing the rights of children who need palliative care ”


The round table will be held at the following address: Vinnitsa, Khmelnitskoye Highway, 7, 1st floor, conference hall of the Department of Social and Youth Policy of the Vinnitsa Regional State Administration.
We invite all interested to join the discussion.
Questions and registration: uacph.org@gmail.com


The round table is held within the framework of the project “Distributing the rights of children, to demand palliative help” with the support of the “Merezha 100 ad hoc life in Rivne”, the European Union and the Ministry of Social Policy of Ukraine.

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On December 20-21, 2019, representatives of the Association took part in the training "Protection of the rights of children in need of palliative care" and a strategic session of pediatric palliative care specialists held in the city of Kyiv by NGO "Network of 100 percent of life in Rivne". At meeting, we discussed the fate of our common child - Order No. 41 of the Ministry of Health, which, obviously, will change only in the conditions of our public intervention.
The advocacy plan for the development of palliative care for children in Ukraine for 2019 has been worked out. This is just the beginning of the way we will have to go, but we are already on the road and sooner or later the present workings will be implemented.
The training was conducted within the framework of the project "Enhancing the role of civil society in the provision of the rights of children in need of palliative care" with the support of the European Union and the project "Development of Child Palliative Care in Ukraine" with the support of the US Embassy in Ukraine, with the assistance of the International Renaissance Foundation

On February 27, at 11-00 am, the Association will hold a round table with representatives of the social services of the Kiev region on the topic “Palliative help to children. Securing the rights of children who need palliative care. ”
The round table will be held at the following address: 01196, Kiev, Lesia Ukrainka Square, 1, 6th floor, Department of Social Protection of the Kyiv ODA, office of the director of the department.
We invite all interested to join the discussion.
Note! A representative’s full name and a passport on the day of the Round Table are required to enter the territory.
Questions and registration: 067-5473255
The round table is held within the framework of the project “Distributing the rights of children, to demand palliative help” with the support of the “Merezha 100 ad hoc life in Rivne”, the European Union and the Ministry of Social Policy of Ukraine.

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Dear colleagues!
A roundtable on "Palliative care for children, ensuring the rights of children in need of palliative care " will be held in Rivne.
Purpose of the event: discussion of the issues of provision of palliative care for children under the age of 18 who live in their homes and families who are in difficult living conditions due to illness of the child - how the cooperation of social services and health care facilities can help these families?
Target audience: social workers of the territorial centers of social assistance to the population, specialists of city, district Children's Services and Centers of Social Services for Family, Children and Youth, medical workers, representatives of public and voluntary organizations involved in the assistance to patients with palliative care.
Date of the event - March 14, 2019, beginning at 12-30.
Venue - Rivne, street. Makarova, 3. KNP CPSM "Jubilee", 6th floor, assembly hall.
We invite everyone to join the discussion.
question, registration: +380 675473255
The event will be held within the framework of the project "Protecting the rights of children in need of palliative care" with the support of the Charitable Organization "Network of 100 per cent of life in Rivne" and the European Union and with the support of the Ministry of Social Policy of Ukraine

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Dear colleagues!
On April 12, 2019, in the city of Dnipro, a Roundtable on "Palliative care for children will be held. Ensuring the rights of children in need of palliative care "
Purpose of the event: discussion of the issues of provision of palliative care for children under the age of 18 who live in their homes and families who are in difficult living conditions due to illness of the child - how the cooperation of social services and health care facilities can help these families?
Target audience: social workers of the territorial centers of social assistance to the population, specialists of city, district Children's Services and Centers of Social Services for Family, Children and Youth, medical workers, representatives of public and voluntary organizations involved in the assistance to patients with palliative care.
The date is April 12, 2019, from 11:00 to 13:00.
Venue - Dnipro, st. Embankment of Victory, 26, 2 floor
We invite all those who wish to join the discussion, as well as representatives of the media to cover the topics of the provision of palliative care.
The event will be held within the framework of the project "Protecting the rights of children in need of palliative care" with the support of the Charitable Organization "100 Percent of Life in Rivne" and the European Union and with the support of the Ministry of Social Policy of Ukraine.

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Dear colleagues!
A round table on "Palliative care for children will be held in Kharkiv. Ensuring the rights of children in need of palliative care "
Purpose of the event: discussion of the issues of provision of palliative care for children under the age of 18 who live in their homes and families who are in difficult living conditions due to illness of the child - how the cooperation of social services and health care facilities can help these families?
Target audience: social workers of the territorial centers of social assistance to the population, specialists of city, district Children's Services and Centers of Social Services for Family, Children and Youth, medical workers, representatives of public and voluntary organizations involved in the assistance to patients with palliative care.
Date of the event - April 23, 2019, beginning at 11-00.
Venue - Kharkiv, pl. Svobody, 5, Gosprom, 3 under the drive, 6 floor, room 201, meeting room.
We invite everyone to join the discussion.
The event will be held within the framework of the project "Protecting the rights of children in need of palliative care" with the support of the Charitable Organization "100 Percent of Life in Rivne", the European Union and with the support of the Ministry of Social Policy of Ukraine and the Department of Social Protection of the Population of the Kharkiv Regional State Administration.

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The Ukrainian Association of Palliative Care for children with the support of the International Renaissance Foundation invites you to register for participation in the III National Children's Palliative Care Forum in Ukraine, which will take place on September 26 and 27, 2019 in Kyiv.

To register at the Forum, please fill in the form no later than July 01, 2019.
The Organizing Committee reports that the Forum will be selected on the basis of completed questionnaires, and recalls that the organizers will not cover the travel of participants, but will provide accommodation (one day) for participants from other cities, as well as meals during the event.

In 2019, the Forum will consider the following issues:
- the development of pediatric palliative care in Ukraine
- treatment of chronic pain in children and the rights of children in need of palliative care
- Perinatal palliative care, support for families who have lost children
- communication in palliative care for children
- the standardization in the work of medical personnel of palliative care, child care palliative care services in Ukraine


Regarding participation, organizational issues, please contact Ms. Marina Lobodina, Coordinator of the Forum, tel. 38067 5473255,
e-mail: marina.v.lobodina@gmail.com
We ask that you distribute information to your colleagues and partners!

On September 26-27, the Third National Palliative Care Forum was held in Kyiv on the initiative of the Ukrainian Association of Pediatric Palliative Care and supported by the Renaissance Foundation, which brought together international experts, Ukrainian experts and activists working to improve the quality of life of children with serious illnesses.
The forum aimed to share experiences and identify next steps for the development of palliative care for children. In particular, advocacy of the adoption of basic regulatory documents, without which it is impossible to develop services for palliative patients, improving the quality of providing pain relief to children, and more.
Palliative care is part of a state-guaranteed package of medical services. This means that the state has assumed responsibility for providing every person in need of palliative care quality medical and social services. One of the tasks of the Forum was to develop further steps and establish cooperation with state structures in order to make state commitments a reality.
“Palliative care is a topic that is only now making its way in our society. However, it is now necessary to lead the way from emotional compassion to concrete actions that will make life easier for children. This will mean an aging society. For our Foundation, this is a very important area in which we help to form communities, accumulate experience and knowledge and share them, ”said Alexander Sushko, Executive Director of Renaissance Foundation, who supported the Forum.
On the first day of the Forum, Joan Marsson, International Ambassador of the International Palliative Care Network, reviewed the international practices for ending child resuscitation, focusing on ethical considerations and standardization of approaches. And the successful experience of fundraising to support the palliative care program for children, the modern principles of treatment for pain in children, were shared by representatives of St. Jude Hospital (USA).
On the second day of the Forum, experts from Poland, Belarus and Ukraine shared their practical experience. A representative of the National Health Service of Ukraine spoke about how the state would provide funding for child palliative care services in Ukraine. This raised a lot of questions and questions.
The holding of the Forum was a powerful impetus for the further development of palliative care and cooperation of activists, physicians and representatives of state structures.