Programme

The names and details of confirmed plenary speakers appear below. Please keep checking our website for updates.

 

Pre-conference courses and workshops

Cost: R650 for the full day, including tea/coffee breaks and lunch

There will be a full day of pre-conference courses and workshops at the conference venue on Wednesday 30 May 2018. You can either choose to go to one workshop in the morning and another in the afternoon OR to attend the one full day workshop on pain management.

You will need to register and pay for the full day of workshops when you register for the conference.


   Workshop Programme

Wednesday 30 June 2018

Morning workshops

Workshop 1   (Room 1): Children’s palliative care in humanitarian situations

Workshop 2  (Room 2): Perinatal palliative care

Workshop 3 (Room 3): Difficult conversations in children’s palliative care

Afternoon workshops

Workshop 4 (Room 1): Reaching out to develop a children’s palliative care service

Workshop  5 (Room 2): Ethics in children’s palliative care

Workshop 6 (Room 3): Supporting others in the face of death

Full day workshop

Workshop 7 (Room 4) : Managing pain in children’s palliative care – from birth to young adulthood

 

Plenary Speakers

Dr Pat Carragher

Dr Pat Carragher has been the Medical Director for Children’s Hospice Association Scotland (CHAS) since 2006. This post involves a mixture of “hands on” clinical care for babies, children and young people with life shortening conditions in Rachel House, Robin House and in various hospitals across Scotland, but also local, national and UK representative strategic work, mixed with elements of research. He has been the Chair of the Association of Paediatric Palliative Medicine, and in 2013 he was elected as a Fellow of the Royal College of Paediatrics and Child Health. In 2016 he took on the role as Chair of the Scottish Children’s and Young People’s Palliative Care Executive (SCYPPEx), which is refreshing a national children’s resuscitation policy in Scotland and is working, as part of the Strategic Framework for Action in Scotland, to contribute to the improvement of palliative care for all in Scotland.

Prof. Julia Downing

Professor Julia Downing is the Chief Executive of the International Children's Palliative Care Network (ICPCN). She is an experienced palliative care nurse, educationalist and researcher, with a PhD that evaluated palliative care training in rural Uganda. She has been working within palliative care for 25 years, with 15 of those working internationally in Uganda, Africa and Eastern Europe. She is an honorary professor at Makerere University, Kampala, and works as an International Palliative Care Consultant and was the team leader on a project funded by the European Union to develop palliative care in Serbia. She has extensive experience in developing palliative care services, policy, clinical care, education and research. She is an experienced presenter at conferences and writing for publication, and is on the editorial board of the International Journal of Palliative Nursing (IJPN). Professor Downing was the recipient of the IJPN’s Development Award in 2006, the Robert Tiffany Lectureship from the International Society of Nurses in Cancer Care (ISNCC) in 2014, and the 2015 Oncology Nursing Society Foundation (ONS) Pearl Moore “Making a Difference” International Award for Contributions in Cancer Care. She serves on the boards of several international non-governmental organizations in Africa, and in the UK is on the executive committee of the Palliative Care Research Society. She is also an Honorary Research Fellow at the Cicely Saunders Institute Department of Palliative Care, Policy and Rehabilitation, at King's College London, and a Visiting Professor at Edge Hill University, and the University of South Wales. Professor Downing is on the Board of the International Association of Hospice and Palliative CAre (IAHPC). When not working in palliative care, she is a musician and is involved in running a music school in Kampala, and various local choirs and orchestras. She is also the Director of Music at her local church.

Kelly du Plessis

Kelly du Plessis, wife and mother of 2 children (aged 7 and 6) and CEO & Founder of Rare Diseases South Africa, a registered NPO born out of necessity when her oldest child was diagnosed with Pompe disease at 11 months old. At the time, treatment for this rare condition was not available in South Africa, and so Kelly’s personal journey of patient advocacy started. Having dedicated her life and career to furthering the plight of those impacted by rare diseases in developing countries, Kelly serves on various boards and committees which focus on improving the quality of life for rare patients. In 5 years, Kelly has taken Rare Disease policy and patient advocacy to new heights in South Africa, and has presented at various national and international conferences to raise awareness and create a new narrative in terms of treatment and access for rare patients. Kelly was recently awarded the African Leadership Award for healthcare (Dec 2016 – Mauritius) with other recent achievements including the successful launch of RareX (the first Rare Disease conference in Africa), founding Africa-Rare.org (an African alliance for Rare Diseases), as well as the implementation of International Rare Disease Day in South Africa. Her current positions include CEO/Founder – Rare Diseases South Africa; Founding Member – Africa-Rare.org; Vice-Chair – Genetic Alliance South Africa (2016); Pulmonary Hypertension Association of South Africa– Board Member at Large, Portfolio Head – Policy and Government relations

Linda Ganca

Linda Leonora Ganca lectures and convenes the palliative care undergraduate programme at the University of Cape Town (UCT) Faculty of Health Sciences within the School of Public Health and Family Medicine. She has a background in Education and Social Work. She also teaches and co-facilitates in the palliative medicine postgraduate diploma course and supervises MPhil students. Linda has a keen interest in research with focus on qualitative methods. Attaining a Social Work degree in her mature age opened a door to palliative care when she joined St Luke’s hospice in Cape Town. It is there that she discovered Palliative Care, which she describes as a way of life. She therefore integrates teaching and social work to inspire both young and old on how to support individuals (and families) facing the challenge of being diagnosed with a life threatening illness. Linda is passionate about children and works closely with ICPCN, PatchSA and Paedspal.

Dr Satbir Jassal (MBE)

Dr Sat Jassal (MBE) is a full time senior partner general practitioner and medical director of Rainbows Children’s Hospice in Loughborough, Leicestershire heading a team of 4 doctors on a 14 bedded unit that deals with children and young adults. He has been a GP for 28 years and has worked in children’s palliative care for over 24 years. He has written and edited the Rainbows Children’s Hospice Symptom Control Manual, co-authored the Oxford Handbook of Paediatric Palliative Medicine, and is editor of the PANG guidelines. He is an editor of Synopsis an abstract journal. He is chair and editor of the APPM Master Formulary. He helped develop the NICE guidelines for PPC as well as the RCPCH education and training curriculum in PPC. Dr Jassal is a lecturer at Cardiff University in Paediatric Palliative Medicine. He has been awarded FRCGP, an honorary FRCPCH and in 2014, an MBE.

Dr Ana Lacerda

Dr Lacerda is a paediatric oncologist working in Lisbon, Portugal, with a very special interest in the implementation and development of paediatric palliative care (PPC) in her country. After graduating from Lisbon University Medical School, she completed her pediatric residency at NYU Medical Center, where she was drawn to the needs of children with complex chronic conditions. While completing an MSc degree in PC at King’s College London / Cicely Saunders Institute she begun raising awareness about the unmet needs of Portuguese children and families. She received the Dame Cicely Saunders Prize for Academic Excellence in Palliative Care (2014), for her thesis “Cause and place of death of children and adolescents in Portugal (1987-2011): an epidemiological study”. She coordinates the PPC Taskforces at the Portuguese Association of PC and the Portuguese Pediatric Society, is a founding member of the Portuguese Observatory of PC and works closely with the Ministry of Health, while teaching PPC at Nova Medical School. She is also a member of the EAPC Paediatric Taskforce.

Dr Michelle Meiring

Dr Meiring is a Paediatrician with a special interest in Palliative Care and Chronic Pain Management. She is the Founding Director of Paedspal, an NGO that provides a paediatric palliative care service to public and private patients in Cape Town. Academically she convenes the Post-Graduate Diploma in Paediatric Palliative Medicine at UCT. An active advocate, Dr Meiring chairs PatchSA (the South African Children’s Palliative Care Network) and is engaged in policy making nationally.

Dr Regina Okhuysen-Cawley

Dr Regina Okhuysen-Cawley is a pediatrician in Houston, Texas and is affiliated with Texas Children's Hospital. She received her medical degree from Universidad Autonoma de Guadalajara and has been in practice for more than 20 years. Having grown up in a resource-limited environment, and having witnessed much avoidable suffering and preventable deaths, she is passionate about health care delivery to the critically ill and early integration of palliative medicine for children with serious illnesses.

Prof. Danai Papadatou

Danai Papadatou is a Professor of Clinical Psychology at the School of Health Sciences, Dept of Nursing, of the National and Kapodistrian University in Athens, Greece. Her clinical experience, research interests, and publications focus on issues related to pediatric palliative care, childhood and family bereavement, health care professionals’ responses to death and community trauma. Her most recent book in English is entitled: In the Face of Death: Professionals who Care for the Dying and the Bereaved. She is also the co-founder and president of “Merimna”, a Greek non-governmental association for the care of children and families facing illness and death. “Merimna” is the only association in Greece that provides pediatric palliative home care services and bereavement support for children, adolescents, families, schools and communities. She has received various international awards for her teaching, research, publication and professional service in the field of pediatric palliative care, and childhood bereavement support.

Huyaam Samuels

I am Huyaam Samuels, a 19-year-old female living in Cape Town, South Africa. I am also living with a rare medical condition and fighting on a daily basis with chronic pain, for which I am on daily medication. I am the Youth Ambassador for PatchSA (Palliative Treatment and Care for Children) I am extremely passionate about Children’s Palliative Care as I believe it is an essential and crucial part of living and giving children a chance to live life and not just exist. They- the children- from all around the world need a voice and be given a chance to be heard. I am honoured I get to be that voice on behalf of all those who are unable to speak up. I can represent them passionately, honestly and wholeheartedly. I am currently a volunteer with the World Hospice Palliative Care Alliance as well (WHPCA). Children’s Palliative Care is what I love, live and strive for.