For more than 20 years, the Children’s Palliative Care Association has been caring for terminally ill children and their families. Currently, there are plans to implement the idea of a children’s palliative care center “Dream Bridges” in cooperation with the organization, local governments and state institutions, which could become the first such center in the Baltics. Therefore, on July 16, the association met with cooperation partners, representatives of state and local government institutions.
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Currently, the association takes care of 350 families with terminally ill children, and the number is growing every year. The service is available to families 24 hours a day, 7 days a week, 365 days a year: 24-hour helpline (consultations of doctors, nurses, chaplains, psychologists and social workers), outpatient consultations and home visits, organization of support groups for parents, siblings. This allows children to live at home rather than in hospitals or care facilities.
In the last two and a half years, the children’s palliative care team has made 12,938 home visits and consultations in the children’s palliative care service, 12,181 telephone consultations, 2,592 online consultations.
Such close daily work with families crystallizes the truly acute and important needs of families, the need to work in a team and the need to develop.
“The main goal of establishing the Children’s Palliative Care Center” Dream Bridges “is to ensure the quality of life of terminally ill children, a moment of respite for families and dignified end-of-life care for children and their families, as well as memorial opportunities. Parents under the auspices of the Palliative Care Association find that often the activities of the association are the only time of the year when they leave home and find a small amount of burnout. It is also problematic to find a caregiver with the right skills, because these children have special needs: not everyone is able to replace a gastrostomy or treat a tracheostomy, to care for a sleeping or non-speaking child.In addition, in a family with a child with special needs, the needs of healthy family members often remains in the background There are 3 children ‘s palliative care centers, which are known in the world as hospice services, but there are no such ones in the Baltics, so we very much hope that together we, Latvia, will be able to build the first one, “says Anda Jansone, the founder of children’ s palliative care in Latvia.
Planned services of a children’s palliative care center:
- day center services;
- a moment of respite for families;
- functional rehabilitation;
- care for the last days of a child’s life in an environment as close as possible to home conditions;
- support groups for parents, brothers and sisters, t. see after the death of a child during the period of mourning;
- education center for specialists in various fields.
In the repeated talks of the Children’s Palliative Care Association with the specialists of the Ministry of Welfare and Health and in the conference “Bridges that unite *” organized by the Children’s Palliative Care Association on June 15, 2021, The Parties shall meet to agree on the best solution for the further organization and development of palliative care services for children. The association organized such a meeting on July 16 this year at the site, where in the future plans to build a multifunctional children’s palliative care center “Dream Bridges”, which will be a support and care center for families caring for terminally ill children with severe functional condition and limited survival.
The following issues were discussed during the meeting:
- interdepartmental cooperation in children’s palliative care as an integrated, holistic care system that requires the development and financing of infrastructure, services (Ministry of Welfare, Ministry of Health, local governments, non-governmental organizations, private sector).
- Creating a network of support centers for families with children with incurable diseases – what is the vision of each department about the need for it?
- “Dream Bridges” as an interdepartmental project to improve support for families and develop missing services – how can each department support it?
- Agreement on specific tasks and steps in the organization and development of palliative care services for children.
During the meeting, all participants acknowledged the need to develop the idea of establishing palliative care centers, the growing urgency of the topic of palliative care and the need for a unified support system in which the state, municipalities, non-governmental organizations, parents and society as a whole cooperate. It is planned to organize working groups in the near future to develop a unified strategy for short-term and long-term children’s palliative care, as well as to develop the idea of establishing a children’s palliative care center “Dream Bridges”.
On October 12, 2021, the Children’s Palliative Care Association will hold the 2nd conference “Bridges that Unite” *, where we will reflect on the progress of cases.
On July 16, 2021, the Children’s Palliative Care Association together with cooperation partners (association “Dižvanagi”, ZS “Valmoniras”) met with Minister of Welfare Gati Eglīte and Parliamentary Secretary of the Ministry of Welfare Evita Zālīte-Gross, Parliamentary Secretary of the Ministry of Health Ilmārs Dūrīte and Sanita Janka, Head of the Social and Labor Affairs Committee of the Saeima, Andris Skridi, Ilze Rudzīte, Adviser to the Latvian Association of Local Governments on Health and Social Affairs, Juris Žilko, Chairman of Kekava City Council, Agnes Geduševa, 1st Deputy Chairman of the City Council, Valta Varika, 2nd Deputy Councilor head of the service Agnese Menci-Katkevičs.
* The event is financially supported by the Society Integration Fund from the Latvian state budget funds allocated by the Ministry of Culture. The Children’s Palliative Care Association is responsible for the content of the conference.
What would the establishment of a children’s palliative care center “Dream Bridges” give to families?
Record of the first conference “Bridges that unite”