Katherine Pettus, Advocacy Officer, Human Rights and Palliative Care, International Association for Hospice and Palliative Care (IAHPC), explains how she has been working with staff of a children’s hospice in Eastern Europe to help them advance children’s palliative care through closer links with international human rights bodies.
Entering the Belarusian Children’s Hospice (BCH) on the outskirts of Minsk the visitor is welcomed into what appears to be a large family-friendly home. A home dedicated to the highest standards of clinical excellence and alignment with international human rights law!
In order to maintain its high standards as the only provider of palliative home care to seriously ill children and their families in Belarus, BCH has to do ongoing national and international fundraising. Director Dr Anna Garckova, and grant writer Elena Anasimova, are politically savvy women who asked me to help them learn more about how to interface with international human rights treaty bodies to advance the cause of children’s palliative care. Interestingly, their Ministry of Foreign Affairs and Ministry of Health asked them to collaborate in writing the Universal Periodic Reviews for Belarus that are presented to the Human Rights Council in Geneva. As a result of one of these reports, the concluding observations of the Committee on the Rights of the Child to the 3rd and 4th Periodic Reports of the Republic of Belarus cited the country for lack of political commitment and insufficient involvement of state institutions in the provision of palliative care for children. This then prompted the Ministry of Health to issue an order determining general conditions for palliative care service development in Belarus and stipulated the creation of palliative care wards in hospitals and children’s homes.
The noticeable gap, however, was lack of funds for medical equipment and medicines for home care and respite services. Since the majority of children and, of course, their parents prefer children to be at home whenever possible, BCH fundraises to fill that gap.
In partnership with UNICEF and contract staff from the Ministry, BCH cares for at least 300 children annually, the majority of diagnoses being congenital and neurological disorders, and about 20% cancers. The hospice, which will soon move to new premises, has three bedrooms for respite and acute care, as well as a teaching room for clinical providers who come from other former Soviet republics to learn about children’s palliative care.
To find out more…
- Belarusian Children’s Hospice
- Friends of the Belarusian Children’s Hospice (UK)
- For information on the human rights and palliative care role of the International Association for Hospice and Palliative Care, please email Katherine Pettus.
Little Stars – encourages universal access to children’s palliative care
Click here to view the trailer from ‘Little Stars’, a series of short films that aims to encourage governments around the world to do more to ensure universal access to children’s palliative care. Moonshine Movies, the film makers, are appealing for funds to enable them to have the film ready for a première at the World Cancer Congress in Melbourne this December – more information at Indiegogo.