Logo The Norwegian Association for Childrens Palliative Care Logo EAPC
European Congress on Paediatric Palliative Care
© 2019
«Children are not a distraction from more important work. They are the most important work»
C.S.Lewis

Speakers


Dr. Ross Drake

Dr Drake is a Specialist Paediatrician in Palliative Care and Pain Medicine at Starship Children’s Health in Auckland, New Zealand where he leads both the Paediatric Palliative Care and Complex Pain Services. Ross’s working philosophy is for children and their families with palliative care needs to receive collaborative and integrated interdisciplinary care with a focus on providing seamless care across tertiary, secondary and primary healthcare settings so the child can be cared for in the setting of their choice.

He has been very involved in teaching and presenting on palliative and end-of-life care and pain management for children in a number of forums. His professional interests include persistent pain syndromes in children with medical conditions, the decision-making process and pharmacovigilance of therapeutic interventions

Professor Eduard Verhagen

Eduard Verhagen, is a paediatrician at the University Medical Center Groningen (Netherlands). Dr Verhagen worked for 5 years in Curaçao (Caribbean) before he came to Groningen to work as the clinical director of the Beatrix Children’s Hospital/UMCG, where he is now a professor of paediatrics and the department chair.

He received his MD and JD from the University of Utrecht (Netherlands) and completed his paediatric specialty training in Amsterdam. His PhD thesis was on neonatal end-of-life decisions in Dutch NICU’s.  He has written numerous scientific papers about ethical decision-making, end-of-life care and neonatal euthanasia. He leads several national research and paediatric palliative care initiatives and functions as a member of several national and governmental medical-ethical advice councils. He is also co-founder of the National Knowledge Centre for paediatric palliative care, a unique network for care and research in the Netherlands.

Dr. Joanne Wolfe

Director, Pediatric Palliative Care, Boston Children’s Hospital; Division Chief, Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute Boston, Massachusetts, USA.

Professor Julia Downing

Professor Downing is an experienced palliative care nurse, educationalist and researcher. She is the Chief Executive of the  International Children’s Palliative Care Network (ICPCN) and a Professor in Palliative Care at Makerere University, Uganda. She has extensive experience in research, presenting at conferences and writing for publication, and is on the editorial board of ecancer, APM and the International Journal of Palliative Nursing (IJPN). She has been working within palliative care for 27 years, with nineteen of those working internationally in Uganda, Africa, Eastern Europe and globally developing palliative care services for adults and children. She is passionate about children’s palliative care and also the role of the nurse and seeks to promote both in all that she does.

Dr. Bård Fossli Jensen

Bård Fossli Jensen believes in the partnership between the doctor and the patient. By gentle guiding when a child is ill, it is fascinating to see how both the child and his parents find coping strategies they often didn’t even know they had.

He is a medical doctor, specialist in pediatric medicine, has a Ph.D. in medical communication and is trained in hypnotherapy. He teaches medical students, doctors and other health care professionals how to combine modern medicine with the latest research in the field of communication. His talk will walk you through what you and your child should expect from your doctor the very first time you meet.

Lizzie Chambers

Lizzie is currently Director of Programmes at Together for Short Lives.  Prior to this she was Chief Executive of ACT for 10 years.  She has authored a number of children’s palliative care documents, including the Guide to the Development of Children’s Palliative Care and the Care Pathway series. Lizzie has also been involved in the global development of children’s palliative care as a Board member of the International Children’s Palliative Care Network from its inception until 2016.   She is currently Co-chair of the Paediatric Taskforce of the European Association of Palliative Care.

Dr. Lorna Fraser

Lorna Fraser initially trained as a Paediatrician, graduating from the University of Aberdeen’s medical school in 1999 and becoming a member of the Royal College of Paediatrics and Child Health in 2002. I then changed career path and completed a PhD from the School of Geography at the University of Leeds in 2012.

She works as a Senior Lecturer in Paediatric Epidemiology at the University of York and she is also the director of the Martin House Research Centre.  Here main topic area is chronic and life-limiting conditions in childhood and the use of routinely collected data in research. Currently she holds research grants from the major funders in the UK including the NIHR and MRC as well as charity grants. She is also a member of the Health Research Authorities Confidentiality Advice Group

Melanie van Dijk

Dipl. Social pedagogic, Family Therapist & Grief Companion.

Melanie worked passionate among other things in the nursing home and as a research assistant in the research focus addiction of the Catholic University of Cologne.

After her study at the University in 2004, she began her final recognition year in September 2004 in the children's and youth hospice Düsseldorf Regenbogenland. She developed successfully on her own, the concept of the accompaniment of healthy siblings. In 2004 did she completed her studies with her diploma thesis: "And about you – they  (do not) care … The psychosocial situation of siblings of incurable and life-limited children"

She also has been working as a Family and Grieving Companion in the children's and youth hospice. She was appointed as Pedagogical Director in 2008, in 2010 appointed as an authorized signatory and in 2013 as Managing Director. Since the beginning of 2019, Melanie founded the academy Regenbogenland in order to offer a continuing education, lectures and readings for professionals/volunteers, affected families and the interested public. In recent years, she has attended several advanced training courses such as palliative care for social workers and seminars on the topic of death and bereavement in children.

Dr. Ros Scott

Ros has over 25 years of hospice volunteer management experience in both adult and children’s hospice organisations including the development new services, structures, framework, quality, training and support programmes.  Currently she is a researcher and consultant in the fields of palliative care and bereavement volunteering. In her consultancy role she has advised adult and children’s hospice and palliative care organsiations on the strategic and operations development of volunteering and is the author of training programmes, volunteering toolkits and resources.

Ros is also an Honorary Research Fellow at the University of Dundee. Her research interests include the role and impact of volunteering in both adult and children’s hospices, palliative care and bereavement, volunteering ethics, and governance. She is the author and editor of a range of papers, chapters and books.

Ros is Co-Chair of the European Association for Palliative Care Task Force on Volunteering, a member of the Scottish Advisory Board for Marie Curie and former Vice-Chair of Cruse Bereavement Care Scotland. She received a lifetime achievement award in 2013 for her work in palliative care volunteering.

 

Sharon Thompson

Sharon Thompson is a best-selling author from Ireland and is one of the first cohort of EUPATI Fellows in Advocacy & Medicines R&D. As a general advocate on the Irish National Patients' Platform for IPPOSI, Sharon has a special interest in rare diseases and palliative care. Sharon attends, presents posters and speaks at international conferences. She also writes and gives talks to medical professionals, to the media and to the general public. In January of this year, Sharon spoke on behalf of the Worldwide, Hospice and Palliative Care Alliance at the World Health Organisation’s 144th Executive Board meeting. Sharon co-founded The Victoria Thompson Scholarship, in memory of her daughter, for the advancement of children's palliative care in Ireland. Presently, this scholarship is linked to the new Masters/Post-grad programme in children's palliative care and complex care in NUI Galway university.

She also is a voluntary moderator of the UK Together for Short Lives families forum and an Irish private Facebook group. She also inspired the first face to face workshop for Donegal families of children needing rural palliative care and counsels other parent advocates to reach their full potential.

Professor Sue Fowler Kerry

Registered nurse and a tenured Full professor with the College of Nursing. She started her post-secondary education at the University of Saskatchewan completing a BA in psychology and a BSN. After graduating she worked in the OR and post-anaesthesia at RUH, then moving to Washington DC., working at the Children’s Hospital National Medical Centre, Washington Hospital Centre, and an Ambulatory Outpatient Surgical Clinic. Returning to Canada, she commenced here MN at the University of Alberta, (Music Distraction to Relieve Injection Pain in Children).  Here PhD was completed in Interdisciplinary Studies, 2008 University of Saskatchewan (Voices of Parents: The Lived Experience of Caring for a Child with Life-Limiting and Life-Threatening Diagnosis within Existing Social Policies).

She joined the faculty of nursing at the U of Saskatchewan. And become a member of the first integrative, interdisciplinary pain management service in North America under the direction of Dr. G. Wyannt. Resulting from my ongoing funded program of research in paediatric pain, I she was invited by Dr. J. Stjernsward, Cancer, World Health Organization, and Geneva, Switzerland to co-chair an invitational consensus conference to develop Pediatric Cancer and Palliative care guidelines in Gargonza, Italy. Following this meetings Dr. Patricia McGrath and she also co-edited, the WHO pediatric compendium, “Cancer Pain Relief and Palliative Care in Children”. This work resulted in numerous collaborations and consultations with WHO, PAHO, George Soros Foundation, Middle East Cancer Consortium and the European Union. Thru this work she has traveled extensively throughout Eastern European and the Middle East. Most recently, she has completed a term as a Board member representing Canada on the International Children’s Pediatric Palliative Care Network (ICPCN). This has further expanded here network of colleagues and collaborators into China, and South East Asia including the Philippines.

Professor Richard Hain

MD BS MSc MSt FRCP(Edin) FRCPCH DipPalMed PGCertEd FHEA

Consultant, Clinical Lead, All-Wales Paediatric Palliative Care Network, Honorary Professor, College of Human and Health Sciences, University of Swansea

In 2000, I he was appointed as Consultant and all-Wales Clinical Lead in Paediatric Palliative Medicine. From a base in the Noah's Ark Children's Hospital in Cardiff, he sees patients at home, on the ward, in outpatients, at school and at Ty Hafan children’s hospice. As a tertiary specialist, he led a Wales-wide network comprising a wide range of professionals caring for children with malignant and non-malignant life limiting conditions.

Academically Richard have written and/or edited several book chapters and textbooks including two editions of the Oxford Textbook and the Oxford Handbook of PPM.  He has also published several research and review articles on ethics, pharmacology and other aspects of palliative care and symptom control in children.  He is chair of the Clinical Ethics Committee and the Individual Patient Funding Review Panel.  In 2012 he completed a master’s degree in Ethics at the University of Oxford and am now preparing a Doctoral thesis for submission.  His thesis considers whether current moral theories can mount a convincing response to the ethical challenges that arise in clinical practice in children, such as calls to legalise infanticide.

In 2018 he was honoured to receive both the Rhodri Morgan Fellowship and John Salaman Scholarship for ethics research.

Julie Ling

Julie Ling has been CEO of the European Association for Palliative Care since January 2015. The EAPC is the leading palliative care organisation in Europe representing 59 member associations from thirty-three countries across Europe and with individual members from 52 countries globally. Originally a nurse, Julie has worked in palliative care for nearly thirty-five years in both adult and children’s palliative care. She has held a variety of posts in clinical care; management; research; policy and the voluntary sector. Julie has written and published widely and is a member of the editorial board of the International Journal of Palliative Nursing. Julie is a regular contributor to education at third level. She successfully completed a PhD by research exploring the respite needs and experiences of parents caring for a child with a life-limiting condition.

Julie is also Chair of the World Hospice and Palliative Care Alliance and a board member of the Jack and Jill Foundation.

Dr. Finella Craig

Finella Craig has been a Consultant in Paediatric Palliative Medicine at Great Ormond Street Hospital (GOSH) since 2002.  She has worked as a paediatrician since 1989. Dr Craig is a specialist in paediatric palliative medicine.

Dr Craig is a member of the following local, national and international groups:

  • The European Association of Palliative Care Paediatric Taskforce
  • Together for Short Lives, Practice and Service Development Council
  • Together for Short Lives Clinical Ethics group
  • North Central London Children’s Palliative Care Network
  • London Children’s Palliative Care Network

She is on the management group of The Child Death Helpline, where she is a shift supervisor, and is a Medical Practice Facilitator with Child Bereavement UK.

Her palliative care training included two years with a community and hospital-based adult palliative care service as well as with the Paediatric Palliative Care team at GOSH.

Research interests

Dr Craig’s research interests are varied and have focused on developing access to palliative care services and palliative care support for children with non-malignant disease. Conference presentations, invited lectures and publications have focused on the following themes:

  • palliative care support in the intensive care unit
  • out-of-hospital extubation
  • neonatal and antenatal palliative care
  • palliative care for young adults
  • the provision of palliative care services within the school community

Dr Craig has contributed to several national and international service and policy documents

Marie Friedel

Marie Friedel is a Franco German Pediatric nurse and holds a master’s in public health (UCLouvain, Belgium) and a diploma in Pediatric Palliative Care (University of Lyon I, France). She worked several years in an interdisciplinary transmural paediatric liaison team in Belgium ensuring continuity of care for children with life-limiting conditions. Since 2000, she is Lecturer at a Nursing and Midwifery High School (Parnasse-ISEI, Haute Ecole Léonard de Vinci, Belgium). Passionate about advocacy in Pediatric Palliative Care and especially giving a voice to children and their parents, she started a PhD in Public Health at the Institute of Health and Society (IRSS) attached to UCLouvain in Brussels, looking at the challenges of exploring children’s quality of life in a family-centred context and through a collaborative approach with all Belgian paediatric liaison teams. Spouse and mother of 3 teenagers, she loves planting seeds to build bridges among people, countries and disciplines.

Natasha Kjærstad Pedersen

Natasha Kjærstad Pedersen is the founder, CEO and advisor of the only organisation in the Nordic region lobbying for the development of children's palliative care services. The Norwegian Association for Children's Palliative Care (FFB). She is a theologist and healthcare worker. Over the past ten years, she has completed many international courses and online courses in palliative care for children, as well as a study module on a master’s level in paediatric palliative medicine in Cardiff. From 2011 to 2016, Natasha was also a member of the “International Children's Palliative Care Network - ICPCN”, which lobbies for children's rights to palliative care services at a global level. She was a board member of the Elisabeth Kübler Ross Foundation from 2013 and continues to be a member of the Advisory Council.

She has translated and published the book, “The Purple Balloon” into Norwegian, and has written several academic articles and essays about children's palliative care in various national and international journals and in public debate forums. She gives lectures and teaches courses on children's palliative care at university, university colleges and in municipalities. She was a representative in the Norwegian Directorate for Health to develop clinical national professional guidelines for palliative care for children, which were completed in the spring of 2016. She participated in the Directorate of Health's reference group in preparing the official report on palliative care. In addition, she was on Ministry of Labour and Social Affairs expert panel, which was tasked with identifying and recommending improvements in the Norwegian Labour and Welfare Administration (NAV). In December 2014, she published a 60-page informational pamphlet on children's palliative care through the FFB, and shared responsibility for the Norwegian edition of the Oxford Textbook of Palliative Care for Children, with Kommuneforlaget publishing company. The Norwegian edition, “Grunnboken i Barnepalliasjon” was published in October 2016. She was also an editor for the Nordic Journal of Paediatric Palliative Care.  Natasha was the editor-in-chief for the book “Affected - stories about anticipatory grief”. She was also editor of the website and ventesorg.no.

Natasha was responsible for the professional content of the first conference on children's palliative care in 2012, and for the Nordic Congress on Paediatric Palliative Care in 2015. She has led a series of seminars on children's palliative care across the country.

In early November 2015, she was invited to participate on an expert panel in Rome, where she contributed to the development of global guidelines for children’s right to spiritual care during palliative treatment. In May 2016, the government appointed a committee for a Norwegian Official Report (NOU) on palliative care, where Natasha participated as a representative. This work was submitted to the Minister of Health in December 2017.  In May 2019 she was elected to as a Board of Directors in EAPC.

She is referred to as the “Mother of children's palliative care” in Norway.

Dr. Jan Aldridge

Dr. Jan Aldridge is a Consultant Clinical Psychologist at Leeds Teaching Hospitals and at Martin House Children`s Hospice, and a founding member of the Martin house Research Centre at the University of York. She works particularly with children and young adults with life-shortening conditions and life-threatening illnesses and their families, and with staff working in palliative care. Her experience includes lecturing, research and professional training in the UK and internationally, including Singapore, China, Chile and the US. She has recently delivered Masterclasses in England, Scotland and Ireland for the national body of children`s palliative care in the UK, Together for Short Lives. She has published extensively in the academic literature and written for professional and lay audiences.  

Claire Quinn

RGN, MSc, BNS (hons), ONC, PGD Palliative Care

Claire Quinn is Lecturer and Programme Lead for both the children's palliative/complex care and adult palliative care postgradulate programmes at the School of Nursing and Midwifery, National University of Ireland.

Claire has extensive clinical nursing expereince in community care, paediatric disability, oncology and adult and child palliative care. Claire contributed to the seminal 2010 Irish policy “Palliative Care for Children with Life-Limiting Conditions in Ireland’’. She is a current member of the National Development Committee for Children’s Palliative Care tasked with implementing policy recommendations.

Claire is responsible for the concept, design and implementation of Irelands first Masters programme for nurses caring for children with life limiting illness. This programme will have 34 graduates in 2020. Recently, Claire is involved in several national research projects and is undertaking her PhD exploring parental choice and location of care for dying children.

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«Children are not a distraction from more important work. They are the most important work»
C.S.Lewis
Ms Hagesæther has won several awards for her work, and regularly exibits both paintings and lithographies. She is behind several public art installations, and her work has been bought by Norges Bank, the National Library of Norway and Statkraft.
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