The ‘Touching Rainbows’ 3rd International Children’s Hospice Congress held in the 2000 year old city of Pécs, located in the south of Hungary, was held last week and provided delegates who attended with much food for thought. It also provided the opportunity to recognise the positive developments that have been made in the provision of palliative care services for children over the past few years.
This congress was the 3rd International Children’s Congress hosted by Szemen Fénye Alapítvány (the Light of my Eyes Foundation) and provided delegates with an informative line up of presentations and workshops.
In her welcome note to all participants, Barbara Gyura, President of the Light of My Eyes Foundation and Founder of Dóri Ház (Dori House) indicated that the foundation and the hospice face many difficulties. Some of these include lack of policies, inadequate state financing and poor public acceptance of children’s palliative care and children’s hospices in Hungary. Her hopes were that this conference would help to close the gap between the services in Hungary and those in other parts of western Europe and the world. In her own words: “We still have a lot to learn, we have to increase our professional knowledge and more development is also needed.”
Opening ceremony
The opening ceremony was a rich Hungarian cultural experience with performances by the Zsolnay Wind Orchestra, Petra Pataki, a regular visitor to Dori House, the Béla Kovács Primary School Band and the Leöwey Sixteen Choir and a warm welcoming address by Dr Zsolt Páva, the mayor of Pécs.
Presentations
Both days saw a rich variety of presentations which included a talk on the ICPCN publication ‘Touching Rainbows‘ for which the congress was named and a look at international developments. Dr Gustáv Kovács looked at the spiritual aspects of pain, while Dr Anda Jansone from the Children’s Palliative Care Society in Latvia spoke on holistic care to reduce suffering of children with brain tumours. Keynote speaker, Dr Satbir Jassal, MBE and Medical Director of Rainbows Children’s Hospice speaker spoke with passion about prescribing for young adults at the end of life and Dr Anita Gergely, a paediatrician from Tábitha House, spoke on research into terminal symptoms of children in end-of-life care.
An interesting look at what helps family resilience was presented by Rise Shemlit, a Social Worker from the Gaddum Centre in the UK and Sue Boucher, ICPCN’s DIrector of Information and ehospice editor, provided delegates with a window into learning and educational opportunities in children’s palliative care.
Professionals working at Dori House, located in Pécs and Tábitha House in Budapest were inspiring with their presentations on the excellent services being provided to life limited and life threatened children in both these cities.
Participation of parents and patients
The participation of parents in the congress provided some insight into the challenges of living with a seriously ill child and the need for the welcome support and respite that palliative care can provide. A stimulating debate between Dr Gábor Benyó, Medical Director of Tábitha House and Ilona Majercsik Szitáné , a mother who lost her son to cancer, looked at the issue of parents seeking alternative therapies for their children.
Klaudya’s millions campaign
Klaudya Rónás, a young woman who has spent many years as a patient at Dori House spoke about her battle with cancer and her determination to not only survive but to help others through her campaign to use puppets to raise funds for Dori House.
Two full days of learning and networking were enjoyed by all delegates while outside a steady downpour of rain provided a fitting backdrop to the ‘Touching Rainbows’ congress.
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