Children’s Palliative Care Conference 2019
“Contemporary Challenges in the Care of Children with Complex and Palliative Care Needs”
4th International Collaborative Children’s Palliative Care Conference
Institute for Lifecourse and Society, National University of Ireland, Galway
21st and 22nd November 2019
**Draft Programme Subject to Change**
Day 1 Thursday 21st November
9:00am - 10:00am
Registration
10:00am - 10:20am
Opening Address & Aims of the Conference
Professor Ciarán Ó hÓgartaigh, President of NUIG
Introduced by Claire Quinn, Programme Director of the MHSc Adult Palliative and Children’s Palliative Complex Care Programme at NUIG
10:20am – 10:40am
Nociceptive Cancer Pain: A Hypothesis Exploration of its Definition, a Debate to Redifine and Move Out of Chronic Pain
Professor Dympna Waldron MD, Professor of Palliative Medicine, Consultant in Palliative Medicine Galway & Roscommon University Hospitals
10:40am – 11:30am
Symptom Management in Children with Severe Neurological Impairment
Dr Julie Hauer, Paediatrician , Boston Children’s Hospital, U.S.A
11:30am - 12:15pm
Managing Transitions Through Good Communication
Bryan Nolan, Communications specialist on End of Life Care, formerly of The IHF.
12:15pm - 12:30pm
Panel Discussion
Dr Julie Hauer, Paediatrician , Boston Children’s Hospital
Bryan Nolan, Communications specialist on End of Life Care, formerly of The IHF.
Professor Dympna Waldron, Consultant in Palliative Medicine, UCHG
Tyrone Horne, Clinical Nurse Co-ordinator for Children with Life-limiting Conditions
12:30pm - 1:30pm
Lunch & Poster Viewing
1:30pm - 2:15pm
Cannabinoids; Science versus Society
Prof Tony O’Brien, Marymount University Hospital and Hospice
2:15pm - 3:00pm
Research Abstract Oral Presentations
Magnolia House. New Building; New Palliative Care Service?
Helen Queen, Lead Nurse Palliative Care & Bereavement Service, Birmingham Women’s and Children’s NHS Foundation Trust.
Breaking Bad News: The Parents’ View
Anne-Marie Jones, Medical Social Worker, Temple Street Children’s University Hospital
Children with complex Health Needs: The Experience of Siblings
Marie Grant, RCN/RGN, Cork University Hospital
3:00pm - 3:45pm
Freedom of Movement in Children’s Palliative Care
Dr Fiona McElligott, Children’s University Hospital, Temple St.
3:45pm - 4:00pm
Panel Discussion
Dr Fiona McElligott, Children’s University Hospital, Temple St.
Prof Tony O’Brien, Marymount University Hospital and Hospice.
Cathy Killeen, Irish Cancer Society.
4:00pm - 4:30pm
Tea / Coffee / Comfort Break
4:30pm - 6:30pm
“A Love that Never Dies”
Documentary film followed by Q&A session moderated by Amanda Roberts, Irish Hospice Foundation.
Jane Harris & Jimmy Edmonds, Documentary Film Makers, The Good Grief Project.
7:00pm
Close Day 1
Evening Networking Event in Monroe’s Galway
Monroes Tavern, Dominick Strret, Galway
Day 2 Friday 22nd November
8:15am - 8:45am
Registration & Welcome Tea / Coffee
8:45am - 9:00am
Welcome Address
9:00am - 9:40am
What Factors Contribute to a Successful Transition from Children’s to Adult Services for Young Adults with Life-Limiting Conditions?
Dr Helen Kerr, Queen’s University, Belfast
9:40am - 10:20am
Needs of Adolescents and Young Adults with Cancer
Dr Scheryll Alken, St James’s Hospital and Our Lady’s Children’s Hospital, Crumlin
10:20am - 10:50am
Tea/Coffee Break & Poster Viewing
10:50am - 11:30am
UN Convention on Rights of Persons with Disabilities and the Implications for Young People with Palliative Care Needs.
Cliona de Bhailis, Department of Law, NUIG
11:30am - 12:00pm
Palliative Care and the Living Teenager.
Fionnbar Walsh, Father of Donal Walsh
12:00pm - 12:30pm
Panel Discussion
Dr Helen Kerr, Queen’s University, Belfast
Cliona de Bhailis, Department of Law, NUIG
Dr Scheryll Alken, St James’s Hospital and Our Lady’s Children’s Hospital, Crumlin
Fionnbar Walsh, Father of Donal Walsh
12:30pm - 1:30pm
Lunch
1:30pm - 2:15pm
Influencing and Achieving Policy Change in Children’s Palliative Care
Andy Fletcher, CEO Together for Short Lives.
2:15pm - 3:15pm
Research Abstract Oral Presentations
Reflections Following the Death of a Child in Hospital: A Qualitative Study into perspectives of the Multi-Disciplinary Team
Alison Cashell, Clinical Nurse Coordinator for Children with life limiting Conditions, CHI, Temple Street Hospital.
Supporting Children With Complex Needs at Home: Challenges for Advanced Community Care Nurses
Cora O’Leary, Clinical Practice Specialist, Resilience Care
A Retrospective Review of the Perinatal Palliative Care Programme at a Large Teritary- Referral Maternity Hospital
Caoimhe Healy, Final Year Medical Student, University College Cork
Identifying Rare Disease Reseach Priorities Through (RAinDRoP) A Rare Disease Reasearch Partnership
Dr Suja Somanadhan, Assistant Professor in Children’s Nursing, Programme Director Children’s and General Registration Education Programme Stage 2 Co-ordinator (Children’s and General Nursing), UCD School of Nursing, Midwifery and Health Systems
3:15pm - 3:30pm
Comfort Break
3:30pm - 4:15pm
Certainty of Goals: When the Outcome is Uncertain for Children with Severe Neurological Impairment
Dr Julie Hauer, Boston Children’s Hospital
4:15pm - 4:30pm
Final Comments & Close
Dr Joanne Balfe, Consultant Paediatrician, LauraLynn Children’s Hospice and Children’s Health Ireland.
Tyrone Horne, Clinical Nurse Co-ordinator for Children with Life-limiting Conditions, Cork University Hospital.