Anna Gorchakova looks at the role of NGOs and the importance of education in building a paediatric palliative care system.

I have worked in palliative care for 28 years and been lucky to learn from pioneers of modern palliative care. From the beginning, they helped me understand that good palliative care is not just about building hospices – it is about a team working with the right philosophy and a systematic approach. Only then can we address the individual needs of each family.

Using these principles, we built a programme for families of terminally ill children. This was the time of perestroika; the state was in chaos and did not interfere with our work. When the state later became involved, putting in place regulations and licensing, we made sure we observed them. And because we aligned our work with the state system, paediatric palliative care in Belarus reached a good level.

But then a problem arose. The state thought it was able to deliver all aspects of palliative care. It said: "Thank you, you've done a great job, but now we’ll take over. You carry on with your NGO work, but we are the main players in the palliative field". Regulations deteriorated, standards fell, and palliative services became a place to dump patients who couldn’t be treated elsewhere. Parents, who were becoming better informed, resisted this approach and conflicts arose.

This deterioration could have been avoided if there had been a recognition of how the state and NGOs could work together. The state system is very robust and stable but cannot bend to every case. NGOs are flexible and can adapt to families’ needs – they can work at a deeper level and put in place a package of care that meets each family’s needs. For the state and NGOs to work hand in hand, we need better interaction with government agencies, not in terms of reporting but in exchanging information. For example, if an NGO supports a family, the state can use its resources elsewhere, and if the NGO sees the family needs the state to step in, we can pass on that information.

Too often, however, we are working with the same families which wastes resources and confuses families. We support 69 families in Minsk while the state has 550 people under its care. Leave us alone to care for our 69 families – we will call in the state if it is needed. Let’s work in partnership, based on the exchange of information.

What is needed to make this system, of which I am only dreaming so far, work? Initially, education. Basic education for medics – courses are not provided, or are taught by theorists who have simply read a pool of palliative books. But palliative care is a very practical field and a theorist cannot answer students’ questions without having practiced. Palliative care is not only medicine, it is also social care, and social workers need training in palliative care which is not currently provided by the state.

Society also needs to be educated. Society is not aware of people's role in helping; they think that if they give money for equipment everything will be solved. We need to explain that equipment needs to be used by a trained and salaried specialist. We need to explain how terminally ill people live: if these patients are given equipment but still can't go out, if they have no one to talk to, are they happier for having this equipment? But don't feel sorry for them – instead, talk about what society can do. Society can create an association to support them, supported by the state. And at the same time NGOs need specialist staff to deal with parliamentary systems and advise on legislation. This will underpin the development of a proper system of palliative care, with NGOs at the centre. Today it is easy to raise money for one-off help, but we need the resources for long-term systematic change.

‘Together’ should be the slogan for the development of palliative care. Together with society, together with the state as partners. Then, and only then, can we reach new levels of development for palliative care.