Palliative care for children & young people

 
Palliative care for children and young people aims to provide them with the best quality of life possible from the time they are diagnosed with a palliative care need until the point where specialist palliative services are no longer required or until end of life. Palliative care provides not just physical care such as pain relief and symptom management but also emotional, social and spiritual support.

Palliative care for children and young people is provided within a number of settings, both in hospital and the community. Some children and young people will receive palliative care on a neonatal, children’s ward or clinic. Others will receive care in their own homes from the Trust’s Children’s Nursing Service.

For children and young people within the Northern Trust requiring specialist palliative care, the Northern Ireland Hospice has a children’s service which provides support for them and their families.

Other children and young people requiring specialist palliative care may be treated within the Belfast Trust at The Royal Belfast Hospital for Sick Children. If this is the case, the primary care staff (GP and district nurse) and healthcare staff within the Northern Trust, will liaise closely with staff in Belfast to provide a multi-disciplinary approach to care, which means many people looking after you.

Who needs palliative care?

Children suffering from life-limiting conditions including:

  • diseases where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life, for example: cystic fibrosis, muscular dystrophy;
  • progressive conditions without curative treatment options, where treatment is exclusively palliative from diagnosis and may commonly extend over many years, for example: spinal muscular atrophy;
  • conditions causing severe disability leading to health complications and likelihood of premature death, for example: severe cerebral palsy.
  • children suffering from life-threatening conditions
  • conditions for which curative treatment is possible but may fail, for example: cancer, babies born prematurely, meningococcal septicaemia.

Northern Trust Children’s/Paediatric Nursing Service

Children’s nursing services are provided at Antrim Area Hospital, Causeway Hospital in Coleraine and Mid Ulster Hospital in Magherafelt.

The Trust also has a community children’s nursing service with three teams providing care to children who are acutely or chronically ill, have complex health needs and/or require palliative and end of life care.

For more information see Northern Trust Children’s/Paediatric Nursing Service.

The Royal Belfast Hospital for Sick Children

The Royal Belfast Hospital for Sick Children (RBHSC) is dedicated specifically to the care of children and provides general hospital care for children living in Belfast, as well as providing most of the paediatric regional specialities (including palliative care) for all children throughout Northern Ireland.

RBHSC provides a regional service to children up to the age of 16 from across Northern Ireland who have been diagnosed with cancer or a haematological disorder.

Children's cancers are treated on a specialised ward. The Hospital focuses on family centred care.

There is also a specialist Children’s Haematology Unit (CHU) on site which specialises in providing care and support to children and their families with a haematological disorder.

Parents of children attending the Haematology Unit at the Royal Hospital for Sick Children can use the CLIC Sargent House facility. The facility has two twin bedded rooms with en suite facilities and is situated at the far end of Allen Ward (turn right out of the CHU and go through two sets of double doors).

Nursing staff are responsible for allocating the bedrooms. There is a fully equipped kitchen for cooking and laundry and a sitting room. Parents are invited to make use of the house and its facilities.

For more information please visit the Belfast Health and Social Care Trust website http://www.belfasttrust.hscni.net or T: 028 9024 0503.

Royal Belfast Hospital Teenage and Young Adult Service (TYA)

The Teenager and Young Adult Service (TYA) is for young people aged 14 to 24 years and consists of two CLIC Sargent social workers and a clinical nurse specialist. They work closely with the teenager or young adult’s medical and non-medical team to help them and their families access the right support and information throughout their care.

CLIC Sargent is a cancer charity for children, young people, and their families. They provide clinical, practical, financial and emotional support to help them cope with cancer and get the most out of life.www.clicsargent.org

Teenage and Young Adult Service (TYA) Team members

Young person’s Clinical Nurse Specialist
A nurse experienced in caring for teenagers and young adults with cancer and works with all those involved in your care. The nurse will closely monitor progress while the young person is in hospital and will provide expert advice, support, information and signposting to other services.

Young person's Social Worker (CLIC Sargent)
CLIC Sargent social workers provide practical, emotional and financial support to help teenagers, young people and their families cope with cancer and its effects. Support is tailored to the individual needs of the teenager or young person and their families.

The teenager and young person's clinical nurse specialist and social worker can also provide information about health, educational support, emotional support, practical advice and medical advice. They also provide the opportunity to meet and interact with other young people who share similar experiences.

Northern Ireland Children’s Hospice

The Northern Ireland Children's Hospice provides specialist palliative care to children and young people with life-limiting and life-threatening conditions and also supports their families across Northern Ireland.

The Northern Ireland Children's Hospice also provides specialist advice to health and social care staff working with palliative children and young people.

Within the Northern Health and Social Care Trust services from the Northern Ireland Children’s Hospice include respite and short breaks for children and young people and their families in their home and in Horizon House, Newtownabbey. The service also offers symptom management, end of life care, psychosocial care and pre and post bereavement support.

The Hospice at Home Service is provided in partnership with the local Health and Social Care Trust offering care from specially trained Staff Nurses and Health Care Assistants in the child's own home for planned short breaks and end of life care.

Saturday day care is also available in some areas and provides opportunities for social and emotional support within local communities whilst the child's clinical needs are met.

Children can be referred to the Hospice by their GP, nurse or any health and social care staff, or parents can also refer themselves.

T: 028 9077 7635
www.nihospicecare.com

Additional support
Together for Short Lives
Leading UK charity for all children with life-threatening and life-limiting conditions.
T: 0808 8088 100
www.togetherforshortlives.org.uk
  

The Palliative Hub
Children and Young People Palliative Care website developed by the All Ireland Institute of Hospice and Palliative Care. www.cypph.com
  
The Palliative Hub, Children & Young People leaflet

PallCare NI
PallCare NI website for children providing information about illnesses such as cancer and muscular dystrophy. www.pallcareni.net/kids

Page last updated:28 April 2015