Cooperation on children’s palliative care
Moscow, 1 November 2013
Partnership between NGOs and the state is especially pertinent to the development of children‘s palliative care
Yulia Chechet, founder and president of the Foundation for the Development of Palliative Care for Children, a charity, said that in her opinion: ‘The part played by state and non-state entities with regard to the commissioning of social services is very relevant to the development of palliative care for children. All over the world this kind of care is closely connected with co-operation between NGOs and governments where charitable organisations are the instigators.’
Speaking at the conference organised by the Vedomosti newspaper and the strategic Initiatives Agency, on Social Services and the Market – New Mechanisms for Joint Working between the State, Business and NGOs, Ms Chechet spoke about the work of the mobile palliative care service for children that the foundation had created. Successful experience of the pilot project clearly demonstrated, in the opinion of Chechet, the utility of commissioning such services from the voluntary sector.
The mobile service has been operating for about two years. It is staffed by doctors, nurses, psychologists, and social workers. There is high demand for the service from families with incurable diseases that offer limited life expectancy. In 2013 the Moscow City Committee for Relations with the Public extended support. The service is provided free of charge and accessible 24 hours a day.
Ms Chechen went on to say that the NGOs have the advantage of flexibility when encountering different situations. That is to say that they are strategically well placed to improve the patient’s quality of life and immediate surroundings and are not profit oriented or tied to quantitative performance indicators. Palliative care for children demanded an approach tailored to the needs of each child and their family. Moreover, NGOs today are in a position to guarantee high quality palliative care because they have put resources into the professional development of their specialists. NGO staff train abroad and invite international professionals to come to Russia where, at present, the government does not provide training in palliative care for children.
Co-operation between NGOs and the state clinics frees up places in hospitals for patients needing intensive treatment. The foundation works in particular with the Scientific Centre for Children’s Health removing a child with an incurable disease from the hospital for supervision at home, and providing him and his parents with comprehensive quality of life support.
However, specialists observe that sometimes a child’s stay in hospital is necessary if only for the reason that the parents cannot provide specialised medical equipment. For example, an artificial lung might be needed or an extended stay on a reanimation or intensive treatment ward. The child’s intellectual faculties might be in good order but they might be isolated from relatives and other children.
When the mobile service provides an iron lung at home and returns the child to their family, it offers the opportunity to develop and learn. With the help of various programmes provided on a charitable basis, NGOs are able to offer the child a life full of positive feelings and nurture, according to the foundation.
Ms Chechet considers that the successful practices adopted by the mobile service should be spread to all regions of the Russian Federation. However, quality standards and reliable financing are important for success. That, in her opinion, demands constructive co-working between state, business and the NGOs.