How we care For parents What is a life-limiting condition? Haven House offers specialist palliative care to life-limited children and young people who have a wide range of conditions. Life-limiting or life-threatening conditions are conditions where there is no reasonable hope of cure; and from which children or young people will die before reaching adulthood. Some of these conditions cause progressive deterioration which require 24 hour care with the care burden met by parents and family members. In order to be eligible to receive services at Haven House, children must have a condition that falls within the criteria outlined below: Group 1 Life-threatening conditions for which curative treatment may be feasible but can fail, and where access to palliative care services may be necessary when treatment fails. Children in long-term remission or following successful curative treatment are not included. Examples: cancer, irreversible organ failure of the heart, kidney or liver Group 2 Conditions where premature death is inevitable, and where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. Examples: cystic fibrosis, duchenne muscular dystrophy Group 3 Progressive conditions without curative treatment options, and where treatment is exclusively palliative and may commonly extend over many years. Examples: Batten disease, mucopolysaccharidoses Group 4 Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death. Examples: acquired neurodisability such as cerebral palsy, birth injury and those who suffer an injury following illnesses such as meningitis, encephalitis or head injury. Children and young people being referred under this category need to fulfil at least three of the following criteria: Total body involvement with poor head control Severe scoliosis that compromises respiratory function Ongoing need for interventions to maintain respirations e.g. ventilatory support, oxygen therapy Regular apnoeic episodes Poorly controlled seizures despite optimum treatment Frequent unplanned hospital admissions Underlying complex nutritional condition which requires accurate assessment, without which would be life threatening. Anyone can refer a child to Haven House, please read our Refer a Child section for more information.