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Joint conference delivers real change for children with hydrocephalus in Bulgaria
21 December 2011
Raising awareness of children's rights is at the heart of what we do, especially when children's health is in danger. While working with children in Bulgaria, we found that as many as 137 children with untreated congenital hydrocephalus were living in institutions. Hydrocephalus is a medical condition which causes the build-up of fluid inside the skull and stops the brain from developing. It can be treated with surgery and the placing of a cerebral shunt to drain the fluid and release the pressure; if left untreated, the condition is severely painful and is likely to be fatal. In Bulgaria, it was stipulated that only the surgery can be funded and not the shunts, which are considered consumables. This meant that many children have been going untreated, usually placed in institutions. As part of our advocacy work to raise awareness of the many causes of institutionalisation, Lumos and the State Agency for Child Protection in Bulgaria organised a conference in November, which focused on the needs and rights of children with hydrocephalus and spina bifida in the country.
The key outcome of the conference was that the Bulgarian Ministry of Health, which also supported the event, declared their commitment to meet the costs of the shunts for children requiring treatment for hydrocephalus, from next year. Until now the costs of the shunts, which can reach up to £3000, had to be met by the family of a child with the condition. This meant that families with low income often had to place their children in institutions, where - due to the limited funds of the institution - the child could still not get treatment. Thanks to this intervention by the Ministry of Health, these children should now receive treatment.
Rossi Petrova, National Representative for Lumos in Bulgaria, highlighting the urgency of the situation, said: "It is important to take urgent action, as children currently living with hydrocephalus are running out of time. We welcome the decision by the Bulgarian Ministry of Health to fund this much needed treatment, which will save many children's lives."
The joint conference was a positive forum for discussion, of the issues faced by children with hydrocephalus and spina bifida and their families, amongst government officials, policy makers, doctors, parents of children with the conditions, directors of children's institutions and the International Federation for Spina Bifida and Hydrocephalus.
The Association of Parents of Children with Spina Bifida and Hydrocephalus in Bulgaria raised awareness of the need for ongoing support and care for the children. Nadia Shabani, Chair of the State Agency for Child Protection, added: "The fund will support children in both institutions and families. It is important that this information should get to as many families as possible."
Kate Richardson, Lumos Director of Programmes, said: "The commitment of government ministers, professionals and families has ensured that Bulgarian children will be given life-saving and life-enhancing treatment for hydrocephalus. As a result children will have the opportunity to live healthy and active lives in their families and communities. It shows what can be achieved when individuals and organisations work together on behalf of the most vulnerable and marginalised in our societies. I am confident that the cooperation will be ongoing and positive outcomes for children will continue to be achieved."
The Regional Representative of the UN High Commissioner for Human Rights Jan Jarab congratulated Lumos for their advocacy work on the issue and assured that his office will continue to follow the developments with optimism.
To keep up to date with all the latest news from Bulgaria, and our other country programmes of work, please visit the news pages of our website.
