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Palliative Care Guidelines - Paediatric Palliative Care Guidelines

Paediatric Palliative Care for children and young people with life limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements of their care.  If focuses on the "enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement" (ACT/RCPCH, UK 2003).

The aims of Paediatric Palliative Care are to:

  • provide family-centred care in both community and hospital settings for children with life-limiting/life threatening illness
  • offer support and advice for the child, family and staff
  • provide education for the child, parents/carers, family, schools and professionals in the community, hospital and voluntary sectors
  • co-ordinate care between home, clinic, hospital and respite/residential services, liaising with fellow professionals as appropriate
  • provide specific advice on and treatment of pain and symptoms
  • assist with care of the child at home or in hospital in the terminal stages of their illness in collaboration with the family, the multidisciplinary team and primary care
  • provide bereavement support for family members and fellow professionals
  • provide an evidence-based resource centre for paediatric palliative care


Pain Management Service: Royal Hospital for Sick Children
Available 0900-1900hrs, Monday-Friday.  Saturday 0800-1400hrs.
Contact: switchboard 0131 536 0000 (bleep 9240)
The Service works with in conjunction with the child's consultant and hospital pharmacy provide advice and a management plan.

Paediatric Oncology Outreach Nurses: Royal Hospital for Sick Children
Available 0900-1700hrs, Monday-Friday
Contact: (direct line) 0131 536 0427 or (switchboard) 0131 536 0000 (bleep 9270)
These nurses offer support and education to young people, families/carers and professionals in hospital and community.

Nurse Specialist Paediatric Palliative Care: Royal Hospital for Sick Children
Available 0900-1700hrs, Monday-Friday
Contact: (direct line) 0131 536 0277 or (switchboard) 0131 536 0000 (bleep  9217)
Offers co-ordination of care, support, advice and education for children with non-malignant life-limiting illness and their families

Adolescent Oncology Nurse Specialist: Western General Hospital
Available 0800-1600hrs, Monday-Friday
Contact: 0131 5367 2974 (direct line/answering machine)
Offers support and education to young people, families/carers in hospital and community

Community Childrens Nursing Teams:
Nurses who offer specialist support to children/young people and their families by co-ordinating and facilitating the provision of nursing care in the home and other community settings and working in partnership with other members of the multi-professional team.

  • Royal Hospital for Sick Children, Edinburgh (City of Edinburgh, East Lothian and Midlothian)
    Available 0800 - 1800hrs, Monday-Saturday
    Contact: 0131 536 0371
  • St John's Hospital, Livingston
    Available 0830-1630hrs, Monday-Saturday
    Contact: 01506 524 382
  • Borders General Hospital, Melrose
    Available 0900-1700hrs, Monday-Friday
    Contact: 01896 826 08

Hospital Chaplain: Royal Hospital for Sick Children
Contact: (direct line) 0131 536 0144 or (switchboard) 0131 536 0000 to radiopage on-call chaplain

Paediatric Pharmacy Service
Available 0900-1700hrs, Monday-Friday
Contact: switchboard 0131 536 0000


Pain/symptom management 
Contact: Royal Hospital for Sick Children (switchboard) 0131 536 0000; ask for ward 2
Paediatric Oncology and Haematology Service
Contact: (switchboard) 0131 536 0000 and ask for haematology/oncology specialist registrar.



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