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Respite care is a short break away from home, providing 'time off' for the child and for their carer - usually their parents. Emergency respite can also be provided within the family home.
Hospices care for the whole person, aiming to meet all needs - physical, emotional, social and spiritual. At Naomi House we care for the child with life-limiting illness, those who are dying and for those who love them. This care can take place in the family home, or in the hospice itself.
The Association for Children's Palliative Care defines life limiting conditions in four categories
1. Life-threatening conditions for which curative treatment may be feasible but can fail, 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 failures of heart, liver, kidney
2. Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities
Example; cystic fibrosis
3. Progressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years
Examples; Batten disease, mucopolysaccharidoses, muscular dystrophy
4. Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death
Examples; severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury
It is often assumed that life limiting conditions all follow the same course with a steady deterioration. However, whilst some children will rapidly get worse, others will decline very slowly, and some will have periods of relatively good health, followed by periods of being very unwell.
This means that their care needs change over time and most children with life limiting conditions will spend time at home, in hospital and at a children's hospice.
When looking at respite care for families, and for children's health care generally, transition is the term used to describe the move from child to adult health care. It is often a time when many of the traditional services for children stops, and families can feel that there is nothing there to support the young adult. At Naomi House, we are just beginning to build jacksplace@naomihouse - a development especially for young adults. We will offer respite and palliative care, in an environment designed by and for young people.