You may have read recent articles in The Guardian or MailOnline about the distressing plight of disabled children in orphanages in Belarus.
The pattern of care provided for Belarusian children with chronic or terminal illnesses such as cerebral palsy is patchy. Belarus inherited the Soviet system of caring for severely disabled children in institutions often known as orphanages. Under this system, parents of chronically ill or disabled children are positively encouraged to give up their child into state care, often at birth. Sadly, these children with severe medical problems and disabilities are frequently labelled as having ‘no potential’ and receive little more than very basic care.
The quality of these institutions varies and depends on the director who seems able to allow or restrict access to visitors from outside. There are some very caring and well-meaning people working at the orphanages but, given drastic underfunding and understaffing, many of them can barely manage to complete essential care let alone give individual attention to their young charges with such complex needs. Belarusian Children's Hospice paediatrician Dr Pavel Burykin quotes the example of one of the orphanages he visited with 260 children and only 2 staff on night duty at any one time. Pavel is working on a project funded by a UK based NGO on how to expand paediatric palliative care and related services for children with severe disabilities and life-limiting conditions in Belarus. It also aims to protect and promote the rights of these children and their families
Over the last 20 or so years, western organisations have been working within Belarus to improve the care of vulnerable children and, as you know, the Belarusian Children’s Hospice (BCH) has been in the forefront of this. BCH provides Hospice at Home care where a team of doctors, nurses, psychologists and carers visits a child at home to deliver an individually tailored care package. This enables a child to be surrounded by the love and emotional support of their families at home. BCH also ensures the parents have the skills and means to cater for their child’s special needs. In addition, BCH organises social activities for the sick child, well brothers and sisters and parents where they can have fun outside the home and meet others with similar problems. All BCH services are provided free of charge.
BCH’s generous principle of sharing its knowledge and best practice means that the model of western-style children’s hospice care at home is spreading throughout the former Soviet Union countries. Thanks to the influence of BCH and other UK and European charities, children’s hospices providing palliative care at home and fostering projects have sprung up in most parts of Belarus so that there is now a choice for parents who have a child with a chronic or terminal condition.
BCH continues to innovate to provide more and more appropriate services to enable all children in their care to reach their potential. Friends of BCH is funding and helping develop a paediatric palliative physiotherapy programme at BCH and children have already been enrolled on the pilot programme overseen by physio specialists from the UK.
For most of the children pictured in last week’s press reports, it is too late for them to return to their family units. Families will have moved on and be unable or unwilling to take them back. We hope that the example of the Mogilev Orphanage in eastern Belarus will be more widely adopted. With the help of an Irish charity, this orphanage has become a centre of excellence and a model of care for chronically ill children who are unable to live at home.
In order to stem the flow of chronically ill and disabled children into institutions, BCH is determined to expand its training programme so that more at home hospice services can be set up around the country. Forest Glade, built by BCH and opened last summer in the suburbs of Minsk, has a state of the art respite care department, day centre, facilities for the new physiotherapy programme and a conference centre where training can be accessed by health care professions from far and wide . The Belarusian Ministry of Health is helping to finance the new centre but BCH will continue to raise funds for its Hospice at Home and training programmes.
What Belarus now requires is more horizontal integration of children’s services. The different services need to learn to work together. The country has already come a long way but despite being the initiator and leader in children’s palliative care in former Soviet countries, there is still a way to go. There is no doubt that BCH will continue to be in the vanguard of improving the provision for and the rights of children with life-threatening and life-limiting illnesses.
Read letters in repsonse to The Guardian article here.