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Upscaling children’s palliative care provision in Ukraine

Author: Joan Marston
11 November 2016
  • Joan Marston on her recent visit to the Ukraine

Joan Marston reports on her recent trips to the Ukraine and the progress being made in that country to introduce children's palliative care.

Joan Marston is a mentor and advisor for the Children's Palliative Care Development Group in Ukraine. She recently spent time there at the invitation of two separate groups. Both visits complemented each other and she reports that she has a better understanding of the needs in Ukraine and the opportunities which are there for the development of palliative care. She also notes that the ongoing war on the Ukraine border with Russia remains unsettling and affects resource allocation at all levels.

Joan writes:

On 29 November in Kyiv I participated in a panel discussion organised by the International Renaissance Foundation with the acting Minister of Health, the Commissioner for Children’s Rights, a bereaved mother and the Director of the International Renaissance Foundation. Participants came from across Ukraine and included representatives from WHO, National Paediatric Association, government hospitals, universities, NGOs, faith groups, parent groups and orphanages.

Ukraine's present acting Minister of Health studied medicine in New York and understands palliative care and what is required. The Commissioner also spoke with understanding, so both government officials were supportive of developing children’s palliative care and palliative care generally. The discussion was respectful and passionate at times. A mother of a child who has a serious and painful condition spoke movingly of the need to get her son liquid morphine, which is not available for children - a major challenge in Ukraine.

Government working group
On 3 November the Commissioner for Children’s Rights invited me to meet with a government working group set up to integrate children’s palliative care into existing Baby Orphanages, which are presently caring for 500 children with palliative care needs. Two of these are already successfully integrating palliative care due to their having visionary Medical Directors and their programmes have been important in influencing government decisions. These children will be kept in the Baby orphanages until they are 18 years old.  

I have visited the two existing programmes in the Baby Orphanages and agreed with the working group that these have great potential for the integration of palliative care. They all have medical, social, psychological and spiritual care services with physiotherapists as well.  

While there is this move to integrate palliative care into the 50 baby orphanages and to start soon, there is presently no concurrent move to provide palliative care for children outside of these orphanages.

There is also a movement within the Ministry of Health to begin providing liquid morphine for children.

Training
From the 3-5 November I participated in a training workshop on paediatric palliative care organised by the Tabletochki Foundation which is a large, well-organised and well-supported charity set up to help children with blood diseases and cancers. Participation was from around Ukraine and included doctors, nurses, psychologists, social workers and managers.

The RCPCF has translated a number of English documents into Russian and have also developed some original materials and have offered the use of these to Ukraine. There were also presentations by the medical directors of the two baby orphanages with developing  palliative care programmes  as well as a paediatric oncology group from Lviv who are providing palliative care within a paediatric oncology hospital setting.

When in Kyiv I met a Ukraine Orthodox Church priest who is managing their church NGO nationally and who has worked with the International Renaissance Foundation to translate and present the Charter on Religions Together for Children’s Palliative Care which was presented on the 3 November in Kyiv. Through the Ukraine Orthodox Church NGO Eleos there is also support for the development of children’s palliative care.

Joan includes in her report that Anna Gorchakova, Director of the Belarus Children's Hospice has done a great deal to support the development of children's palliative care in Ukraine and will be returning there to teach at the end of November. 

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