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Who can be referred to us?

Any infants, children or young people who have a diagnosis of a life-limiting illness or suspected life-shortening symptoms up to the age of 19.

This includes unborn infants and neonates with anticipated short lives or difficult symptoms.

Young people can be supported by the Clinical Nurse Specialist through a transitional period into adult palliative care services until the age of 25.

The following four groups described by Together for Short Lives (formerly known as ACT) are some examples of the types of illnesses that children and young people may have who can be referred to the team:

  • Group 1 - Life-threatening condition for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: cancer, irreversible organ failures of heart, liver kidney.
  • Group 2 - Conditions when premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. Examples: Duchene Muscular Dystrophy, Cystic Fibrosis.
  • Group 3 - Progressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years. Example: Batten Disease, Mucopolysaccharidoses.
  • Group 4 - Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.  Example: severe Cerebral Palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs and a high risk of an unpredictable life-threatening event or episode.