The 6th International Conference on Children’s Palliative Care in Countries of Eastern and Central Europe to be organised by the Belarusian Children’s Hospice took place at the IBB Conference Centre in Minsk in November. There were 200 delegates from Belarus, Russia, Ukraine, Latvia, Lithuania, Kazakhstan, UK, USA, India, South Africa and Serbia and two and a half days of presentations, workshops and networking.
Among the host of high profile speakers were Dr Ludmila Lyogkaya of the Belarusian Ministry of Health, Anna Garchakova founder and director of BCH, Joan Marston CEO International Children’s Palliative Care Network, Dr StefanFriedrichsdorf Minnesota Children’s Hospice, Peter Ellis CEO Richard House Hospice UK and Mary Muckaden founder of children’s palliative care in the community in India. Friends of BCH chairwoman, Daryl Ann Hardman, gave a keynote speech on the importance to a children’s hospice in Eastern Europe of having a dedicated supporting organisation in the UK. This encouraged discussion and it was decided to form an Association of Eastern and Central European Children’s Hospices. This organisation will act as an information provider and support organisation for children’s hospices and palliative care services in ‘Eastern’ Europe and former USSR countries.
Dr Stefan Friedrichsdorf
On the last day of the conference, hospice parents were invited to come along and have their say about BCH services. It was agreed that BCH was a ‘guardian angel’. Palliative care in a hospital ward can be isolating and frightening for a child but BCH services mean that they can to live at home, receive care and the whole family are supported.
Dr Ludmila Lyogkaya said that palliative care is now being actively discussed by the Ministry of Health and she hopes that a palliative care module developed by BCH will become an obligatory part of training for doctors and nurses.
The parents made a point of praising the multi-disciplinary teams at BCH. Nurses take a leading role, doctors are available by phone or in case of need and the psychologists are easily available. Parents found the moral support of BCH ‘fantastic’, ‘after years of despair I have been reassured that I am important and that there was somebody there to listen to me’. At present, Larissa is the only carer at BCH and there is always a long queue for her services. Parents would like to have more carers available. Having a carer visit means that a parent can go out without their child to have a break or to attend to important matters. In the case of one mother who has two life-limited daughters, she is able to take one to a medical appointment without having to take her other daughter as well.
Dr Pavel Burykin, a doctor at BCH who was brought to the UK by Friends of BCH for training, paid tribute to the BCH nurses whom he described as ‘the backbone of children’s palliative care and more important than the doctor who has a supporting role’. This very enlightened opinion caused a few heads to turn!
Session attendance and participation at the conference was excellent and the feedback at the end was hugely positive.
Mother of a hospice child