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Young people with life-limiting conditions (LLCs) and life-threatening conditions (LTCs), diagnosed in childhood and presenting with palliative and complex healthcare needs, often have diagnoses congenital in aetiology and with complex multi-system and neurological manifestation. Their care needs, both medically and socially, are largely unfamiliar to adult palliative care services, traditionally concerned with the care of an older population and often providing services for end of life and cancer. It is known that young people with LLCs and LTCs are now often living considerably longer and this is observed across a range of conditions. The National Council for Palliative Care defines palliative care as: the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.

journal of the royal college of physicians of edinburgh/the journal of the royal college of physicians of edinburgh

Challenges and ‘Obstacles': Reframing Our Perspective on the Transition into Adulthood for Young People with Life-Limiting and Life-Threatening Conditions