Palliative Care Conference:
Short Lives: Making a Difference
An Interdisciplinary Conference
Fri 24th -Sat 25th November 2017
Farmleigh House, Phoenix Park,
A BIG THANK YOU to all presenters for allowing us to share their presentations from the Conference, some of which can be viewed here on video
The PowerPoint presentations from various speakers at this year’s conference are also available for DOWNLOAD HERE
Please Note: Some of our speakers have chosen not to upload their presentations due to data protection issues or the sensitive nature of the content.
You can also download the “Children’s Palliative Care from Policy to Practice” (HSE NDC for Children’s Palliative Care) This short publication highlights achievements, challenges and future plans for the development of children’s palliative care services in Ireland.
Addressing the Building Bridges-Home, Hospital and Hospice Conference, Professor Liben said communication and relationships are the essence of children’s palliative care. He stressed the importance of nurses in the provision of palliative care for children.
“A nurse’s skill in building relationships and communication with children is crucial” Professor Liben said. He said involving siblings in the care of a child with life limiting condition or palliative diagnosis had been shown to help siblings in the long term. “Siblings involved in the care of a sick child do better when there brother or sister die,” he said. Professor Stephen Liben who is Director on the Paediatric Palliative Care Programme at Montreal Children’s Hospice in Canada travelled to Ireland for the two day event at Dublin’s Farmleigh House last week.
He told delegates -mostly clinicians from paediatricians, doctors, nurses and allied care professionals: “You are the difference you make”.
It’s estimated that tragically almost 4000 children in Ireland are currently living with a life-limiting condition and that on average 1,873 children currently have active palliative care requirements.
Some 350 children die in Ireland each year from a life limiting condition.
This conference was a celebration of the progress made in palliative care for children over the last 10 years and an acknowledgement that there is lot more work to do. Almost 150 people attended the event from across Ireland, Romania, Norway, Canada and the UK.
Emily Logan, Chief Commissioner of the Irish Human Rights and Equality Commission who opened the conference said: “All children have a right to health and thus to palliative care.”
Dr Mary Devins who is Ireland’s only consultant paediatrician in palliative care said “palliative care is a philosophy of care”. Dr Devins said palliative care does not always need a building and “care can happen anywhere”. She stressed that palliative care is not ”no care” and earlier involvement of the palliative care team is vital for families.
National lead for palliative care in the Health Service Executive, Sheilagh Reaper-Reynolds outlined how policy and implementation is nurturing the growth of children’s palliative care in its own right. She said “great progress has been made”.
Professor Charles Normand – Edward Kennedy Chair in Health Policy and Management at Trinity College Dublin – argued that it can make economic sense for palliative care for children to be provided in the child’s own home.
Professor Normand said: “Studies have shown that care in hospital tends to be much more expensive for these children and in most cases is less suitable. Shifting the balance towards support for people to remain at home achieves more at lower cost. It is hard to argue for doing less for more. He said we need to demonstrate that are not misusing the resources that we already have. He revealed the financial toll and life-limiting condition can have on a family. A third of a family’s income is spent on a sick child in the home with the cost even higher if the child is in hospital.
Michelle Hartnett who is a play specialist at LauraLynn Children’s Hospice outlined the importance of play in helping bereaved children to find a “new normal” after the death of a sibling.
European Association of Palliative Care Chief Executive Officer Dr Julie Ling highlighted the factors which may push parents to opt for palliative care for their children in their own homes. Dr Ling said: “However whilst respite care at home is seen as the preference of most parents there are also many factors which make this challenging and these will be discussed.”
Clinical Nurse Specialist in Paediatric Palliative Care, Our Lady’s Children’s Hospital, Dublin, Imelda Hurley outlined the changing referral patterns to a children’s palliative care service after the appointment of a consultant paediatric with a special interest in palliative care to the hospital.
Claire Quinn, LauraLynn Children’s Hospice, Head of Research and Lecturer at NUI Galway outlined the importance of further research into paediatric palliative care and prioritizing what areas of research are targeted. She said including the voice of the child in this research is crucial.
Ann Marie Jones, Head Medical Social Worker at Temple Street Children’s Hospital , Dublin presented the Childhood Bereavement Care Pyramid. The pyramid is a guide for professionals and concerned adults in identifying and responding to the needs of children and young people who have experienced a loss. She said: “Children need attention and supports to learn to cope and deal with changes death brings.”
Mother of four Tina Priestley from Naas, Co Kildare outlined how she “lived a lifetime” with her son Bobby who died when he was thirteen months old. Bobby was born in 2008 with the chromosomal disorder Tetrasomy 9P. During his short life the family received welcome support from the Jack & Jill Foundation and various partners in children’s palliative care. Her advice to other parents who are caring for children with a life limiting illness is to “grab every bit of help offered.”
Dr Daniel Nuzum – Healthcare Chaplain at Cork University Maternity Hospital presented his research on the spiritual impact of a life-limiting diagnosis given to parents during pregnancy. His study revealed that the death of a baby challenged the spiritual beliefs of expectant parents and “raised deep existential questions” as they commenced a perinatal palliative care journey.
“Parents felt that their spiritual needs were not adequately met during pregnancy and this study highlights the need to identify and attend to the spiritual needs of parents in perinatal palliative care,” Dr Nuzum said. He told delegates: “It’s never too late to start that one chance to get it right”
Professor Mary King from the Department of Paediatrics at University College Dublin gave a practical presentation on symptom management of a child with complex neurological issues.
Senior psychologist at LauraLynn Children’s Hospice Dr Aidan McKiernan outlined the importance of respite for family functioning and parental coping in paediatric palliative care.
LauraLynn Children’s Hospice’s Claire Quinn demonstrated a new nursing skills assessment tool called the ‘PaedPAL TASK’ to assist professional learning and development in children’s palliative care.
Delegates were welcomed to share in the first screening of a new educational learning resource “Learn from Me” produced by Claire Quinn and consultant paediatrician Dr Joanne Balfe of LauraLynn Children’s Hospice. This resource features the voices of many parents and family members who wish to let healthcare professionals know what they really needed to know and provides a rare insight into experiences with healthcare professionals .
Dr Michael McDermott, a consultant in paediatric pathology at Our Lady’s Children’s Hospital, Dublin spoke about the processes and complexity involved in the “privilege” of caring for a child after death. Dr Michael Capra, consultant in paediatric oncology at Our Lady’s Children’s Hospital, Dublin gave a talk on “Oncology and Palliative Care – Understanding Each Other.” He said the “hope trajectory crucial as as well as honest communications.”
Sarah Meaney, research officer, National Perinatal Epidemiology Centre, University College Cork spoke about perinatal palliative care when one twin dies. She said there is a need to acknowledge the loss of a twin whilst caring for the surviving twin.
Senior musical therapist Dee Gray and senior occupational therapist Anna Brown, LauraLynn Children’s Hospice outlined the role music can play in children’s palliative care.
Dr Des McMahon, specialist registrar in Palliative Medicine, St Luke’s Hospital Dublin and Our lady’s Children’s Hospital, Dublin presented a study of antenatal and neonatal referrals to an Irish paediatric Specialist Palliative Care Conference.
The conference held on Friday and Saturday was a collaboration between eight partner organisations;The Irish Association for Palliative Care, The Irish Hospice Foundation, Mercy University Hospital, NUI Galway, Our Lady’s Children’s Hospital Crumlin, The Jack and Jill Children’s Foundation and LauraLynn Ireland’s Children’s Hospice.
For further information on this conference or the speakers, please contact Jane Flynn, Irish Hospice Foundation 087-2356801 or Carmel Doyle, Jack & Jill Foundation 087-2473537.
It is estimated that tragically more than 3840 children in Ireland are currently living with a life-limiting condition and that on average 1,873 children currently have active palliative care requirements a major conference due to take place at Farmleigh will hear. Some 350 children die in Ireland each year from a life limiting condition.
Inconsistencies in the healthcare system is sometimes a factor in encouraging parents of children with life limiting illnesses to make a choice for palliative care provision in the home or other setting. European Association of Palliative Care Chief Executive, Dr Julie Ling will make the claim when she addresses the Children’s Palliative Care: Building Bridges – Home, Hospital and Hospice Conference which begins in Farmleigh this Friday.
Dr Ling said: “There are many factors that influence parents’ choices and preferences for respite in the home environment. These include a mistrust of the healthcare system, often based on previous experiences, a desire for their child to be cared for at home and remain part of the family, and issues with travel and transport to get to out of home respite. “However whilst respite care at home is seen as the preference of most parents there are also many factors which make this challenging and these will be discussed.”
Leading health economist Professor Charles Normand-Edward Kennedy Professor of Health Policy at Trinity College Dublin will argue that it can make economic sense for palliative care for children to be provided in the child’s own home. “Studies have shown that care in hospital tends to be much more expensive for these children and in most cases is less suitable. “Shifting the balance towards support for people to remain at home achieves more at lower cost. It is hard to argue for doing less for more,” Professor Normand said.
Professor Normand said: “Research has also shown that families who are supported to keep the child at home get what they want or need, although some families would put more emphasis on some rehabilitation support. Successful models of care use expert nurses to help design and broken packages of support, tailored to the needs of each child and family.
International expert in children’s palliative care, Professor Stephen Liben, Director of the Montreal Children’s Hospital Paediatric Care Programme since 1995 will discuss the benefits of Paediatric Palliative Care – that it is not just end-of-life care, will discuss how we bridge between different medical teams and different units (eg obstetric, maternity, paeds, outpatients, community sector) and will share his personal work experiences from the Canadian Health Care system. Other eminent speakers include Dr. Mary King, Department of Paediatrics, University College Dublin, Mr. Michael Mc Dermott, Consultant Paediatric Pathologist and Dr. Michael Capra, Consultant Paediatric Oncology at Our Lady’s Children’s Hospital Crumlin Dublin.
ONE MOTHER’S STORY
Mother of four Tina Priestly from Naas, Co Kildare will detail her own experience of palliative care for children. Her youngest son Bobby was born in 2008 with the chromosomal disorder Tetrasomy 9P. He passed away at home aged thirteen months. During his short life the family received welcome support from the Jack & Jill Foundation and various partners working in children’s palliative care.
Ireland’s only Consultant Paediatrician with a special interest in Palliative Medicine, Dr Mary Devins are among almost 30 experts scheduled to present at the conference. Dr. Devins will outline the the practical changes and challenges since she was appointed 5 years ago. Dr Devins will discuss the increase in referral rates and complexities of children that she and her team now care for.
Chief Commissioner of the Irish Human Rights and Equality Commission Emily Logan will make the opening address.
The spiritual impact of a life-limiting diagnosis given to parents during pregnancy will be revealed by Dr Daniel Nuzum – Healthcare Chaplain at Cork University Maternity Hospital – who carried out research on the topic. His study revealed that the death of a baby challenged the spiritual believes of expectant parents and “raised deep existential questions” as they commenced a perinatal palliative care journey. “Parents felt that their spiritual needs were not adequately met during pregnancy and this study highlights the need to identify and attend to the spiritual needs of parents in perinatal palliative care,” Dr Nuzum said.
Additionally, the need to recruit and retain an educated and skilled workforce in the specialty of children palliative care nursing will also be explored by Ms. Claire Quinn, Head of Research at LauraLynn Children’s Hospice and Lecturer for the Children’s Palliative /Complex Care MSc programme at NUI Galway/UCD.
This second conference is a celebration of the progress over the last 10 years but with a lot more to do. The Conference is an exciting collaboration between the Irish Hospital Foundation, The Irish Association for Palliative Care, LauraLynn Ireland’s Children’s Hospice, HSE, NUI Galway, Our Lady’s Children’s Hospital Crumlin, the Mercy Hospital Fundraising and Jack & Jill Children’s Foundation.
For further information on this conference or the speakers, please contact Jane Flynn, Irish Hospice Foundation 087-2356801 or Carmel Doyle, Jack & Jill Foundation 087-2473537.
Posted: 19th April, 2016
Notes to Editor:
Children’s palliative care is still a new specialty in its own right. The majority of deaths are in the first days, weeks and months of life. Making sure these children with life-limiting conditions and their families, each receive the best possible palliative care, requires true partnership between the various stakeholders.
Only 8 days left until the Conference and we are pleased to announce that we are now fully booked!
However if you wish to add your name to a cancellation list , please contact Amanda Vaughan directly on 01 268 6654 or email her at email@example.com.
Thank you to all delegates who have registered to attend and we are very much looking forward to meeting you all in the beautiful, springtime surroundings of Farmleigh next weekend.
We were delighted to see two of our Key Speakers featured in The Irish Times Life & Style section of today’s newspaper, entitled ” Palliative Care: little lives deserve more support” by Sheila Wayman.
Read the inspirational story of Tina Priestley, a parent who gives an insightful account of her personal experience of the help and support she received while caring for her son Bobby … Tina’s Story
And also hear from economist Professor Charles Normand, who discusses the enormity of the financial burden of children’s illness on families.
Families of children with life-limiting conditions spend about a third of their post-tax income on the additional costs of caring for their child.
“Even with the best efforts of voluntary and statutory supports, the economic burden on families is huge,” says economist Prof Charles Normand, who is professor of health policy and management at Trinity College Dublin and also a senior investigator at the All Ireland Institute of Hospice and Palliative Care. Read more…
We were delighted to receive a large number of abstract submissions for both poster and platform presentation during the Conference. Following careful consideration of all abstracts submitted, the members of the Scientific Committee have reached a decision on the final eleven abstracts that will be presented orally during the Conference. From providing respite in children’s palliative care to the spiritual impact of a life-limiting diagnosis in-utero, the themes of the chosen abstracts are of a multidisciplinary nature that will interest, inform and challenge all delegates.
The topics of the chosen abstracts are as follows:
We hope you can join us on April 22nd at Farmleigh Dublin for what will be a fascinating and informative conference. More info: www.cpcconf.ie
Registration is NOW OPEN for the 2nd Children’s Palliative Care Conference; Building Bridges – Home, Hospital & Hospice
Following the success of our 2013 conference, we are continuing to build on the knowledge and share the expertise of those who work in children’s palliative care.
Children’s Palliative Care is a new, evolving speciality in its own right. In Ireland, it is estimated that over 3,840 children are living with a life-limiting condition and on average 320 children die each year. The majority of these deaths are in the first few days, weeks and months of life. Making sure that these children with life-limiting conditions and their families receive the best possible palliative care requires collaboration between many stakeholders.
The eight partners (HSE, IAPC, Irish Hospice Foundation, Jack & Jill, LauraLynn Children’s Hospice, Mercy University Hospital, National University Galway and Our Lady’s Children’s Hospital Crumlin) offer an invaluable learning opportunity for those working in children’s palliative care on how we can continue to build a united, palliative care service and a greater understanding of family care needs.
Our conference programme reflects the range of services, knowledge and approaches to caring for a child and their family. Those involved in organising and presenting at this conference recognise that working together is the best way to achieve excellence in care for children and their families.
Register Now Here
This conference is for Health Professionals only.
Successful Conference on Children’s Palliative Care hosted at Royal Hospital Kilmainham
Key points from our very successful conference hosted on Friday 29th and Saturday 30th of November
Connecting Home, Hospital and Hospice in Children’s palliative care
Key providers of Children’s Palliative care have joined forces over last weekend at the Royal Hospital, Kilmainham for Ireland’s first major conference on Children’s Palliative Care.
Experts in palliative care from Ireland and overseas were on hand to share their expertise at the two- day conference.
Among the International special guest speakers, Dr Patrick Carragher, GP and Medical Director, Children’s Hospice Association Scotland shared insights into the Scottish National perspective and how this can be helpful to improving palliative care in Ireland, he said: “Ireland must ensure all children receive the best possible palliative care regardless of their geographical location and their diagnosis. Palliative Care should be more than just symptom management and should include provision of respite and care of the child and family from diagnosis through to death and bereavement. The ultimate goal is to ensure all children live and die well”
Dr Finella Craig, Lead Consultant in Paediatric Palliative Medicine, Great Ormond Street Hospital shared her experiences in decision making in children’s palliative care highlighting that health professionals are facing increasingly ethical and medical dilemmas in ensuring the best interests of the child and family.
The delegates also heard from other palliative care experts including Dr Joanne Balfe, Consultant Paediatrician, LauraLynn Children’s Hospice and the National Children’s Hospital, Tallaght who focused on the concept of ‘personhood’ and the child. She also examined some of the key ethical challenges in paediatric and palliative care to ensure that the best interests and rights of children with exceptional healthcare needs are respected.
Attention was drawn to the huge developments in palliative care in Ireland over the past number of years by Dr Julie Ling, Head of Strategy, LauraLynn and Maeve O’Reilly, Consultant in Palliative Medicine, St Luke’s Hospital and Our Lady’s Children’s Hospital, Crumlin; “The whole area of palliative care in Ireland has seen vast improvements over the last number of years, including the appointment of Dr Mary Devins Consultant Paediatrician with specialist interest in paediatric palliative medicine, and 8 outreach nurses. Further advances include Healthcare Professional committee. But we still face a number of challenges in the area, such as funding, expanding the workforce and integration between voluntary and state sectors.”
The event was jointly organised by care providers including LauraLynn Children’s Hospice, the HSE, Jack and Jill Foundation, Our Lady’s Children’s Hospital Crumlin and the Irish Association for Palliative care. The two-day conference focused on strengthening collaborations between palliative care providers and making sure children with life-limiting conditions and their families receive the best possible palliative care.
Dr Julie Ling, Conference Chair continued: “A key output from the conference is the importance of working together with all children’s palliative care providers and this event has given us the opportunity to hear from the experts and the area of children’s palliative care can only benefit from that. Linking home, hospital and hospice is the only way to ensure families receive the best care possible.”
We thank all that attended and welcome your feedback – please click here for the evaluation form.
Ms. Frances Fitzgerald, Minister for Children & Youth Affairs – Accepts our Invite!
We are delighted to say that we received a letter on the 25th of June from Minister Fitzgerald to say that she is delighted to address our conference at Royal Kilmainham Hospital in November. We really look forward to hearing her thoughts and how her department will support the efforts of those working in the area of children’s palliative care.
We are pleased to announce that our conference has been recognised for 7.5 points by the ICGP. We also have received Category 1 Approval -7.5 CEU’s from An Bord Altranais na Cnáimhseachais na hÉireann.
Coming Soon Children’s Palliative Care: Connecting Home, Hospital and Hospice
A collaboration of organisations, interested in the improvement of hospital, hospice and home care for children with life-limiting conditions and their families met in April 2013.
The outcome of their deliberations was the organising of Ireland’s first collaborative Children’s Palliative Care Conference and we are delighted that the internationally renowned experts, Dr. Finella Craig and Dr. Pat Carragher, have accepted an invitation to present and share their invaluable experience.