Ireland’s 4th International Children’s
Palliative Care Conference:

Contemporary Challenges in the Care of Children with Complex and Palliative Care Needs
An Interdisciplinary Conference

Thursday 21st - Friday 22nd November 2019

National University of Ireland Galway



Dr Scheryll Alken

Dr Scheryll Alken, MB BCh BAO MRCPI, is the Aspire Clinical Fellow in Adolescent and Young Adult (AYA) Medical Oncology at St James’s Hospital and Our Lady’s Children’s Hospital, Crumlin. She received her medical degree from the Royal College of Surgeons in Ireland. She then obtained membership of the Royal College of Physicians in Ireland (MRCPI) and entered specialist medical oncology training, both in Ireland on the Higher Specialist Training (HST) Scheme and in the UK as Clinical Fellow in Neuro Oncology and Drug Development in the Royal Marsden Hospital. Having completed her HST, she was awarded an inaugural Aspire Clinical Fellowship. Her current research interests include the disparities in care of the AYA Oncology patient. She has presented her research on disparities in outcomes for the AYA patient both nationally and internationally.

Andy Fletcher

Andy Fletcher joined Together for Short Lives, the UK charity for children’s palliative care as the Chief Executive in June 2018 having been the Chief Executive of Longfield, a provider of community hospice care in Gloucestershire, since June 2015. Prior to joining Longfield Andy had been Director of External Affairs at Together for Short Lives for five years. A teacher by training, Andy’s career has involved leading strategic development, public affairs and communications in the private and voluntary sectors. He was previously Director of Communications and latterly Joint Chief Executive of the National Childminding Association.

Dr Julie Hauer

As a clinician scientist, my clinical expertise and innovation is focused on the rare population of children with severe neurological impairment (SNI). Such children commonly have multiple co-morbidities that significantly impact health and quality of life with resulting complex medical care and decision-making needs. My clinical and research interests include symptom treatment in such individuals, including pain, gastrointestinal symptoms such as retching and feeding intolerance, and dyspnea during respiratory exacerbations. I am board certified in Pediatrics and in Hospice and Palliative Medicine. I am faculty at Boston Children’s Hospital, Harvard Medical School and the medical director of a long-term and respite care facility for children and young adults with severe neurological impairment. My work has included innovative symptom treatment protocols targeting the mechanisms of pain generation specific to this population and development of the American Academy of Pediatrics (AAP) endorsed Clinical Guideline: Pain Assessment and Treatment in Children with Significant Impairment of the Central Nervous System. I have also written a book on the medical and palliative care needs of such individuals: Caring for Children Who Have Severe Neurological Impairment: A Life With Grace.

Prof Dympna Waldron MD FRCPI

The first to identify and present results reflecting that ‘opioid toxicity in an otherwise stable patients heralds imminent sepsis’. My hypothesis is that our body may be producing it’s own endorphins in preparation for sepsis, thereby the ‘external’ opioids become temporarily redundant. 3 decades of research into ‘Individual Quality of Life’ outcome measurement. As individuals we re-calibrate and so outcome measures based on ‘calibrated outcomes’ may be missing the most vital information. This phenomenon is known as ‘Response shift’. Recently published use of outcome of QoL as a ‘Clinical Tool’. Also an interest in research into GI dysmotility and the role of Somatostatin analogues in effective symptom control. Interest in Lymphedema of lower limbs and the intervention of Thrombolysis and/or stenting. Organised 5 International Conferences; Cuisle Beatha, ( Interested in Positive versus Negative language at EOL.

Dr Helen Kerr

Helen is a Senoir Lecturer in Education in the School of Nursing and Midwifery, Queen’s University, Belfast.  Helen’s responsibilities include Pathway Lead for the post-registration Specialist Practice in Oncology programme, coordination of the Evidenced Based Nursing module and co-chair of the Staff Development Committee.  Helen’s educational and research interests lie in the broad area of oncology and palliative care.  Research completed in 2016 as part of a PhD identified the factors that were considered to contribute to an effective transition from children’s to adult services for young adults with life-limiting conditions on the island of Ireland.  In 2017 Helen was awarded the International Journal of Palliative Nursing Researcher of the Year award, and was also runner up in the Royal College of Nursing, Northern Ireland Nurse Researcher of the Year, for this research.  Helen led in the organisation of an all-Ireland Transition Workshop in 2016 with over 80 service users and service providers attending which aimed to identify the key priorities of action in Ireland, with regards the transition to adult services.  Helen secured the national Florence Nightingale Travel Scholarship award in 2016 to continue expanding this research interest.  Current research is focused on the use of a Healthcare Passport for young people with life-limiting conditions.  In 2019 Helen secured a Burdett Fund for Nursing grant to develop research on the impact of the specialist practice qualification on clinical practice and patient care.  Helen is a member of the All Ireland Institute of Hospice and Palliative Care (AIIHPC) Early Career Researcher Forum, the Palliative Care Research Forum Northern Ireland (PCRFNI) executive committee and the Together for Short Lives Transition Regional Action Group (RAG).

Dr Fiona McElligott

Dr. Fiona McElligott is a newly appointed Consultant in Paediatric Palliative Medicine (PPM) to Children’s Health Ireland at Temple Street, with liaison in reach to The Rotunda Hospital.

A graduate of University College Cork, she is a fellow of The Royal College of Paediatrics and Child Health, UK and The Royal College of Physicians of Ireland.  She completed a diploma in paediatric palliative care in 2012, prior to pursuing sub-speciality GRID training in PPM in Yorkshire, UK.  During this time she was the trainee representative on the PPM College Specialty Advisory Committee (CSAC).

Prior to returning to Ireland, Fiona worked as a consultant in PPM in the National Health Service (UK) in Leeds and in Sheffield and was an executive member of the Yorkshire and Humber Children’s Palliative Care Network as well as chair of its Education Subgroup. She was an honorary lecturer for Leeds and Sheffield Universities.

Fiona is a member of the National Development Committee on Children’s Palliative Care, and a board member of LauraLynn Ireland’s Children’s Hospice.

Bryan Nolan

Bryan Nolan is an experienced Training and Facilitation Consultant specialising in a person-centred approach to Healthcare, Teamwork, Life Transitions, End of Life Care and Compassionate conversations.

Bryan’s career spans over 30 years; He has 23 years’ experience working at the cold face in Healthcare chaplaincy in both the Rotunda and Beaumont hospitals.  He understands the challenges working in healthcare presents and this has led him to deliver Wellness at Work programmes to help staff care for themselves and each other so they can continue to deliver excellent care.

For the last 13 years Bryan worked with the Irish Hospice Foundation initially as a development coordinator for the Hospice Friendly Hospitals programme in Dublin North East and latterly as a senior trainer/ facilitator, developing and delivering high quality education to healthcare staff all over Ireland in every healthcare setting. His unique depth and breadth of experience enables him to deliver a wide range of programmes from Maternity/paediatric to older age.

As an experienced facilitator he has  worked with the National Cancer Control Programme training facilitators to deliver the IHF ‘Delivering Bad News ‘ training programme, , He has consulted with the   Scottish NHS to help develop their education strategy and resources for end of life, bereavement and loss. He has also provided consultancy services to many other national and third level organisations.

Bryan’s approach to communication training is to remind healthcare staff that” People will not always remember what you say but they will always remember how you made them feel’’ This is at the heart of good communication.

Professor Tony O’Brien

Tony O’Brien is Clinical Professor of Palliative Medicine at the College of Medicine & Health, University College Cork and Consultant Physician in Palliative Medicine at Marymount University Hospital & Hospice and at Cork University Hospital, Ireland. He undertook his higher specialist training at St Christopher’s Hospice, London. Professor O’Brien has served as chairperson of the National Advisory Committee on Palliative Care, the National Council for Specialist Palliative Care, the Irish Association for Palliative Care and the Council of Europe Expert Committee on Palliative Care.  He also chaired the Health Products Regulatory Authority’s Expert Working group on ‘cannabis for medical use – a scientific review. Prof O’Brien has published and lectured widely on various aspects of palliative care policy, pain and symptom management and safe opioid us. He has a particular interest in ethical and legal issues at the end of life.      

Fionnbar Walsh

Fionnbar Walsh is the father of the late Donal who came to prominence in his final weeks of life with his writings and interviews and anti Suicide messages.

Fionnbar wrote the best selling novel “Donal’s Mountain “ “How one son inspired a nation”.  He is a frequent speaker for the Donal Walsh #livelife Foundation which has a reach of over 50,000 young people annually continuing Donal’s conversation on the value of the gift of life.

In normal life Fionnbar works in Hospitality Management, is a rugby coach and Munster Associate Referee. He is married to Elma and they have another child namely Jema.

In Donals memory he is now an active cyclist and fundraiser and now feels that as a “Mamil” (middle aged man in lycra) his son is having the last laugh!

Joanne Balfe

Dr Joanne Balfe is a Consultant Paediatrician with a special interest in paediatric
neurodisabilty and palliative care and works in LauraLynn Children’s Hospice and Children’s Health Ireland @Tallaght. A graduate of RCSI, Joanne trained in paediatrics in Ireland and London.

She has a MSc in Healthcare Law and Ethics from RCSI and Diploma in Children’s
Palliative Medicine from the University of Wales, Cardiff. Joanne is a senior Lecturer in
Paediatrics in the Discipline of Paediatrics, Trinity College Dublin and lectures to
undergraduate and postgraduate students on Children’s Palliative care, neurodisability and ethics.

Tyrone Horne

Tyrone Horne is a clinical nurse coordinators for children with life limiting
conditions (previously known as children’s outreach nurses), based in Cork, a
role he has been in since 2013. He started working in Hospitals in the UK as a
playspecialist working 1 to1 with children including children at end of life. He
then trained as a children’s nurse in Cambridge, working in Peterborough prior
to moving to Ireland working in several hospitals in Dublin and Cork. Prior to
this role Tyrone worked as an assistant manager in St Josephs Foundation,
managing staff across many settings caring for children with intellectual
disabilities and often complex needs.

In his current role he has sat on many committees including the children’s
expert nursing group & the neonatal/perinatal bereavement subgroup. He
chaired corks first remembrance service for children that have died, and gives
many lectures on children’s palliative care including annual lectures at UCC.
In 2016 Tyrone completed a post graduate diploma in palliative care at NUIG.
His most recent undertaking is becoming a Schwartz round facilitator in CUH.
He says he is delighted to be co-chairing this conference.

Clíona de Bhailís

Clíona de Bhailís is a PhD Candidate at the Centre for Disability Law and Policy (CDLP),
NUI Galway. Her research focuses on supported decision making for young people with
disabilities and the UN Convention on the Rights of Persons with Disabilities.

In her previous role with the CDLP she worked as a Research Assistant on the European Research Council funded Voices of Individuals: Collectively Exploring Self-determination (VOICES) project.

She holds a Bachelor of Civil and graduated with first class honours from the LL.M in Public Law in NUI Galway in 2013 with a minor thesis in the area of legal capacity and access to justice for people with disabilities.