Caring for terminally ill children in Belarus and the former Soviet Union
By Daryl Ann Hardman - Chairwoman, Friends of the Belarusian Children's Hospice (UK)
Among the negative news about Belarus in the western media, there is one bright spot: Belarus has the most advanced system of care for terminally ill children in the former Soviet Union and Eastern Europe. Belarus’ enlightened attitude to the chronically and terminally ill is thanks in huge part to the fantastic work done by one of its leading NGOs, the Belarusian Children’s Hospice (BCH).
BCH was founded in 1994 and in 2011 cared for 206 children and their families in their own homes. It works with children who have all types of diseases. In recent years, it has been seeing many babies born to women affected by Chernobyl radiation 26 years ago, these babies have strange life-limiting syndromes.
Maps showing the international children’s hospice scene have vast empty spaces in Eastern Europe and FSU. With one exception. Eight red blobs in Belarus representing the Belarusian Children’s Hospice and its 7 satellites. Russia has tragically few blobs. In Russia, terminally ill children are mostly cared for on hospital wards, cut off from their home surroundings by bleak hospital walls and technology. The good news is that BCH is now able to respond to pleas from neighbouring FSU countries, including Russia, and is starting to export its model of children’s palliative care. For eleven years our organisation, Friends of the Belarusian Children’s Hospice (UK), has been raising money to cover BCH’s staff salary bill and help to buy and renovate its buildings. Two years ago, we initiated and set up BCH’s own fundraising department in Minsk which now brings in 50% of BCH’s running costs. Our aim is to help BCH eventually become financially independent.
BCH has developed from three beds in a hospital to a leading charity in Belarus recognised by the state. Most of BCH’s young patients are cared for at home, so its medical teams make regular home visits. BCH has its own small in-patient department for crisis and respite care. It also has a holiday site in the countryside where hospice children have free holidays under specialist care. There are counselling and bereavement sessions for families.
I would like to tell you about my visit to one of BCH’s young patients last October. Ksenia, just over one year old, has spinal muscular atrophy and is not expected to live more than 2 years. If it were not for BCH, Ksenia would be lying in the intensive care department of a hospital for the rest of her short life. Luckily Friends of BCH was able to send her a portable ventilator, so she has moved back home where her mother cares for her. This means Ksenia gets constant love, care and stimulation. Her parents have given permission to use photographs of Ksenia, as a way of expressing their gratitude for the support they have been given.
Friends of the Belarusian Children’s Hospice (UK) relies totally on donations in its work. We are a voluntary organisation and take no commission from donations. If you can support us we would be very grateful. BCH in Minsk is happy to receive visitors from the UK at any time. Please let us know if you would like to arrange to visit.
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www.friends-bch.org.uk
SCRSS (Society for Co-operation in Russian and Soviet Studies)
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