Liz O’Donoghue – Clinical Nurse Specialist Our Lady’s Children’s Hospital
Claire Quinn, Head of Clinical Education and Research, LauraLynn Children’s Hospice/ Lecturer NUI Galway
Hilary Noonan, Children’s Outreach Nurse – HSE
The diagnosis of the life-limiting illness and the prospect of losing a child are unthinkable for any parent. You may be in your local hospital or in a larger city Hospital when you are told that your child or adolescent has a condition requiring palliative care and may not live for a long time.
The term palliative, life limiting or hospice or will be confusing for you and wherever you are, you will never forget the time you heard the words or the impact that they created within your family.
But you are not alone.
Whether you are in a regional or a city hospital there will be someone who can help and explain what these terms mean and what the future holds.
In many paediatric units across the Island you will probably meet with a Clinical Nurse Specialist in palliative care, a Children’s Outreach Nurse (RoI) or a Macmillan Nurse (NI) who works alongside the child’s paediatric, medical and multi-disciplinary team including doctors, nurses, dietitians, physiotherapists, social workers, chaplains, play specialist, music therapist and psychologist, where available. You can avail of this new team and express your concerns, fears, hopes and expectations. In return, they can offer you guidance to care for your child, help you to learn new skills and provide the necessary resources to aid you at this difficult time. Discussions with families about possible symptoms and illness progression are helpful in making decisions including where parents would ultimately like to care for their child. Wherever you choose to care for your child, the team can arrange the necessary care for your child and your family and everyone focus will be on maximizing the child’s quality of life.
In reality, families very often move between care settings such as home, hospital and hospice. Regular communication between families and healthcare professionals is vital. When or if families wish to bring their child home from hospital, discharge planning is undertaken by the hospital team in conjunction with your child’s Outreach Nurse (RoI) or palliative care nurse and this includes referral to your GP, Public Health Nurses (RoI), Community Children’s Nurses (NI), District Nurses (NI) and voluntary agencies. Arrangements can be made with established community adult palliative homecare services or paediatric ‘hospice at home’ services to provide specialist palliative care at home. The team is there to help families navigate difficult choices and finds a way forward together. Irrespective of your child’s needs, at no point should any parent or guardian feel alone or isolated.
Below you will find an overview and the contact details for the two major children’s hospitals in the Republic of Ireland and Northern Ireland. .
The Palliative Care team in Our Lady’s Children’s Hospital in Crumlin (OLCHC), Dublin can provide support and advice to children with life-limiting illnesses and their families, whether they are in Dublin or elsewhere. The service includes symptom management, psychosocial, spiritual and practical care for the child and their family throughout their palliative journey and at end of life whilst in hospital.
If you are under the care of OLCHC, you may meet the Clinical Nurse Specialist in Palliative Care who can support your care needs and offer advice and support.
The term palliative is more than just end of life care, and an established relationship between the regional Palliative Care teams and Paeditric Specialist palliative care can provide a supportive relationship inclusive of local community, hospice and hospital based teams supporting realistic palliative care locations when needed.
The Children’s Haematology Unit provides a regional service to children from across Northern Ireland who have been diagnosed with cancer. Around 50 new patients with malignant conditions are seen every year. If treated in time over 80% of children survive cancer and 90% survive blood disorders such as leukaemia. We care and support the child and their family throughout their cancer journey. Palliative care is provided to all children as, when and how they require this. The care may be as an inpatient, an outpatient or at home. Our medical and nursing staff are experienced in providing individualised care as the child’s condition and symptoms require. Our Macmillan Nurses provide an outreach service into the community ensuring that should a family choose to care for their child at home they will be supported to do this. The Macmillan Nurses work closely with the child’s primary care team. We also work closely with the Northern Irelands Children’s Hospice should this be the choice of the child and the family.
The hope for the future is to expand the service to allow it to offer support to other children who pass through the our hospital with non-oncology conditions which require palliative care.
Web: Royal Belfast Hospital for Sick Children Belfast