My name is Alina Conti Wuilloud, MD paediatrician from Argentina. Last year I finished my fellowship in palliative care for children with Dr. Rut Kiman, Chief of Paediatric Palliative Care team at Hospital Prof. A. Posadas at Buenos Aires, and a member of the ICPCN Board of Trustees. After I received my degree I was given the chance to travel and the opportunity to meet with other ICPCN members around the world.
My first visit was to London, where I was kindly received by Katrina McNamara, Director of Practice and Service Department at Together for Short Lives. She arranged for me to meet different teams working in children’s palliative care, one of which was a Community Team from the National Health Service (NHS). I had a meeting with Bernardette O´Gorman, community matron from the paediatric palliative care life force team, who showed me how home visits are conducted, depending on the needs of the patients and their families, how treatment and follow up is arranged with the specialist and how the plan for emergencies is articulated with the hospital and the ambulance services; within advance care planning. There I also met a Play Therapist who described their bereavement work and described the meetings they organise for families on important dates.
I spent one day with the Paediatric Palliative Care Team from Great Ormond Street Hospital (GOSH). I was able to participate in their weekly discussion on patient management and learnt about in-patient referrals. I was fortunate to be given a tour around one of the best known children´s hospital worldwide! Furthermore, I had the privilege to assist in a home visit with their head of department, Dr. Finella Craig.
Finally, I visited Demelza Children´s Hospice, where I was amazed by the resources they have for children with life limiting diseases, for respite care and also their facilities for children and their families within the last days of life.
These visits proved to be a good representation of how palliative care for children is immersed within the UK health system. The three teams have developed different levels of complexity within their practices. In this sense, it was very enlightening to participate at the GOSH Open Day, this meeting was held to improve communication between primary care physicians and paediatricians with the secondary and tertiary levels of care at the hospital. I was also honoured to receive an invitation for the meeting of the Together for Short Lives Practice and Service Department Advisory Council.
My second destiny was a little more exotic. I travelled to Mumbai, India, to meet with Dr. Mary Ann Muckaden, co chair of the ICPCN Board of Trustees and Chief of the Palliative Care Department at Tata Memorial Hospital. I remained there for three weeks observing the work of her team. I experienced their famous hospitality right from the time of my arrival, when first year fellow, Dr. Arun, picked me up from the airport in the middle of the night!
Tata Memorial Hospital is recognised as one of the leading cancer centres across Asia, and receives patients from all over India and neighbouring countries. It is also the first cancer institution in the nation to establish a Palliative Care Service. The Unit receives referrals for in–patient care and also has an out-patient department, where I spent much of my time learning about patient management and counselling. Of course I could also observe much about Indian culture. Although suffering is in essence the same for all humankind, it was a great experience for me to be able to see my colleagues working with the amazing diversity which only India can offer. To fulfil my interest even more, they have been running a paediatric clinic for ten years, so I could gain practical experience on symptom management and communication concerning children as well. I met with the Home Care team, social workers, nurses and volunteers, who took me into the houses of patients.
Fortunately, I was given the opportunity to visit Jawahar village where the team is developing a pilot project for children´s palliative care in a primary care setting. I had a meeting with the PS Rural Hospital director and with the primary care physician, both of whom were very happy with the improvements made through receiving education in palliative care. They face many difficulties, not only from being away from the city, but also from the challenge they have in showing respect for the lifestyle and beliefs of the people living in the village, who usually won’t seek the services of a doctor until their disease is very advanced.
Finally, I was so pleased to be there for World Hospice and Palliative Care Day and attend a wonderful party where we sang songs and danced with patients, families and the whole team. I got to wear a beautiful Sari, typical Indian wear, which I was given as a gift from fellow doctor, Prajacta.
London to Mumbai, same mother Earth? Two completely different realities, but still both were enriching experiences which taught me a great deal about palliative care.