There are estimated to be 49,000 children and young people with a life-limiting or life-threatening condition in the UK aged 0-18 years. We would expect that all these children would benefit from some elements of the palliative care approach and from knowing about the support that is available from children’s palliative care services.
Further research has estimated that there are around 55,000 young adults aged 18-40 living with a life-limiting or life-threatening condition in England, of which almost 13,000 are in the 18-25 year-old age group. The data for this study was only readily available in England.
More than 5,000 children aged 0-18 die every year in England and Wales, about half of these die from life-limiting or life-threatening conditions. The highest rates are in newborn babies under one month old.
Categories of life-limiting and life-threatening conditions
There are a wide range of life-limiting and life-threatening conditions affecting children and young people, which can be categorised broadly into four groups. Diagnosis is only part of the process of identifying children who need support from palliative care services: the spectrum and severity of the disease as well as the needs/wishes of and impact on the child and family also need to be taken into account. The four categories can be defined as follows:
- Life-threatening conditions for which curative treatment may be feasible but can fail
Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of 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.
- Conditions where premature death is inevitable
There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
Examples: cystic fibrosis, duchenne muscular dystrophy.
- Progressive conditions without curative treatment options
Treatment is exclusively palliative and may commonly extend over many years.
Examples: batten disease, mucopolysaccharidoses.
- Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health
Children can have complex health care needs, a high risk of an unpredictable life-threatening event or episode, health complications and an increased likelihood of premature death.
Examples: severe cerebral palsy, multiple disabilities, such as following brain or spinal cord injury.