Anna Garchakova, director of the Belarusian Children's Hospice, writes about networking within regions to provide palliative care for children in Belarus.
The Belarusian Children’s Hospice (BDH) is located in Minsk, the capital city of Belarus. It is a non-state charitable organization. The hospice staff have been working with the government to ensure that palliative care is available to those who need it in the country. There has been a focus on networking with doctors living in different regions who have been trained in palliative care in order to provide palliative care services to patients living away from the capital.
According to the European Association for Palliative Care (EAPC): “The provision of palliative care within a culture where health care is chronically under funded and difficult to change presents a number of challenges.” However, BDH has been working with the government to overcome some of these challenges and help more people access palliative care.
Since 2000 BDH have been running palliative care courses for doctors and nurses employed in state offices all over Belarus. These courses are committed to increasing participants’ knowledge on providing palliative care to children. Staff members hold adults’ and children’s palliative care training courses care courses together with the Belarusian Medical Academy for Post-Graduate Education. We also arrange such courses in the regions for doctors and nurses so that they can understand the notion of palliative care.
As part of these courses, the doctors and nurses are offered training in psychology. In Belurusian medical universities there isn’t such a subject as ‘psychological aspects of palliative care’ in the curriculum. That’s why we provide basic knowledge (for instance, communication skills, peculiarities of communication with terminally ill children) for doctors and nurses.
Following their training, these people are listed in a special register, and sign an agreement of collaboration with BDH. If there is a child who needs palliative care away from Minsk, staff at BDH are able to consult the register, and find a doctor or nurse closer to the patient’s home who has been trained in palliative care.
Until the end of 2011, BDH used a centralized system of transferring a child from medical health care clinics to the hospice. If we have a child far away from Minsk (BDH provides palliative care within a distance of 250 km from Minsk) we refer to the register to investigate who participated in courses on palliative care in this region. If we find such a person we make a contract with him or her.
This system was in place until the end of 2011. In 2012 the position of “freelance specialist on palliative care” was introduced by the Belarusian Ministry of Health. Currently this position is held by the Medical Director of BDH. Such positions were introduced in each region of the country. Through our register, we have a list of people who are responsible for providing palliative care in Belarus. We familiarize coordinators on palliative care with a child and then organize assistance. If a child needs more specialists we provide such people. Many years ago it was easier to provide palliative care in Minsk rather than in regions, but anyway there have been some fruitful changes in some regions.
Moreover, we have ‘Life’ mobile phone operator in Belarus. This mobile operator does not charge us for its services within our hospice group of callers, except for a small subscription fee. It facilitates our collaboration with doctors in the regions (as we are available 24/7). Now we are in the process of developing a programme to hold meetings with the regions by teleconference. We have achieved success only in small towns which are not far from Minsk. But we encounter a lot of problems in villages (they are far away from Minsk more than 250 km) as there aren’t any specialists and it’s difficult to get there. Our core aim is to broaden palliative care in the regions.
Read more about palliative care for children in Belarus and other countries of the former Soviet Union on the International Children’s edition of ehospice.