GPAtlas🧭 Clinical context & scope
This framework applies to infants, children and young people aged 0–17 years with a diagnosed life-limiting condition – an illness expected to result in an early death. There are over 300 such conditions, and almost 50,000 children and young people across the UK (around 40,000 in England) are living with one. The clinical task is proactive planning and symptom management to maximise quality of life, not the pursuit of a new diagnosis.
In primary care the GP is usually one member of a defined multidisciplinary team (MDT), with a named medical specialist coordinating care and a specialist paediatric palliative care team leading complex symptom control. The GP’s contribution is continuity, community anticipatory prescribing under shared care, recognising deterioration, and supporting the whole family – including bereavement care, both before and after death.
Two skills anchor good care: parallel planning – planning simultaneously for living well and for deterioration, because the course is often unpredictable – and recognising the phase of illness, so care escalates appropriately. NG61 distinguishes “approaching the end of life” (likely to die within weeks) from “dying” (likely to die within hours or days).
| Term | Meaning in NG61 |
|---|---|
| Life-limiting condition | A condition expected to result in an early death, either for everyone with it or for a specific child. |
| Approaching the end of life | The phase after a change in condition meaning the child is likely to die within weeks. |
| Dying | Likely to die within hours or days. |
| Neonate | A baby aged up to 28 days (children 0–12 years; young people 13–17 years). |
| Parallel planning | Holding several care plans at once and using whichever best fits the child’s situation at the time. |
| Advance Care Plan (ACP) | A core, shared, formal plan covering the condition, agreed decisions, symptom management and the child’s and family’s wishes – distinct from a DNACPR order. |
Source: NICE NG61 · NICE QS160
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