First International Children’s Palliative Care Network Conference Julie Ling
© 2014 MA Healthcare Ltd
wenty five years ago my friend Isabel and I backpacked around India, and we always speak of it fondly and vividly remember our visit to Bombay. Attending the first International Children’s Palliative Care Network (ICPCN) conference in the renamed Mumbai on 10–12 February gave me the opportunity to see how much had changed. Mumbai is still a vibrant, colourful, amazing city. It is incredibly noisy, primarily because of the constant car horns. Taxi journeys are not for the faint-hearted: you almost have to breathe in as cars pass perilously close on the outside, inside, or both. The people are friendly, helpful, and curious, and the weather was beautiful and sunny—a welcome break from the storms and floods of a cold Irish winter. The location was chosen by the ICPCN as part of its strategy to improve the quality of life of children with life-limiting conditons worldwide by raising awareness, lobbying, and providing opportunities for education and development. By bringing leaders in the field of children’s palliative care (CPC) to conference locations in the developing world, the ICPCN envisages better attendance from local residents. This was reflected in the attendance of 250 delegates from 32 countries, including many from India. The conference was held in the Tata Memorial Centre cancer hospital in south Mumbai. Walking to the conference centre each morning, I passed patients and their families sleeping on the street outside the hospital gates, waiting for the outpatient services to open—a rather sobering experience. The conference provided a wide range of talks and workshops, the latter covering topics including pain and symptom management, principles and practice of CPC for nurses, and psychosocial issues and communication in CPC. The main body of the programme focussed on transforming CPC from ideas to action. It was therefore both appropriate and an honour to hear Sister Frances Dominica, the founder of the first children’s hospice, talk about the history and development of CPC. She reminded delegates that hospice is first and foremost about providing a service to children and their families.
International Journal of Palliative Nursing 2014, Vol 20, No 3
I’m not sure whether it was because of the location of the conference, but a plenary talk by Professor Stephen Liben had particular resonance. He spoke about mindfulness and care for the care giver and reminded us to always be grateful for what we have. Professor Richard Hain presented us with ethical ideas and philosophies that became even more relevant as the conference progressed, as the Belgian Government voted to legalise euthanasia for children with life-limiting conditions. This led to the ICPCN Mumbai Declaration 2014 (www.icpcn.org/icpcn-mumbai-declaration-2014/). A really interesting feature was the showing of a series of short films titled Little Stars. These are produced by Mike Hill of Moonshine Movies and are to be made available to download from the ICPCN. They provided excellent examples of various aspects of CPC. Each is named after the child whose story features in the film; I was particularly moved by one named Marmaduke’s Story. There was also an opportunity to visit the children’s ward, where two quotes adorn the wall. One is from Mahatma Ghandi and reads ‘Strength does not come from physical capacity. It comes from an indomitable will.’ The other is an anonymous quote that simply says ‘You never know how strong you are until being strong is your only choice.’ On a visit to the children’s day unit we were told that each day 180 children are admitted, many for chemotherapy. The hosts pulled out all the stops to esure we had a memorable time. We saw a dance show by local children, met a Bollywood star, and even experienced an Indian wedding feast! Has Mumbai changed much since I last visited? Yes and no. There are many more high-rise buildings and more wealth, but only for some. The gap between rich and poor remains wide. CPC is a small but growing specialty. Conferences such as this offer the opportunity to network with colleagues from many different countries. Whether you live in Ireland, Norway, Africa, Kuwait, or India, we all have things in common and much to share and learn. I look forward to the next ICPCN conference, which is likely to be in Argentina. I● JPN
Julie Ling is Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18, Republic of Ireland Correspondence to: ijpn@ markallengroup.com
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