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Children’s hospice services exist to provide specialist care and support for children who will not live to reach adulthood, and their families, from the moment of diagnosis onwards. They provide a range of care and services in a friendly home from home environment or indeed within the family home. All services are free to children and families.
Although families willingly invest their total love, energy and attention in the care of their sick child, their lives become governed by the relentless timetable of nursing and medical tasks. Holidays, family activities and outings are denied, parents rarely have a normal mealtime, a full night’s sleep or time to themselves. Healthy brothers and sisters may feel left out as attention focuses on the sick child.
A children’s hospice service is characterised by flexible, family centred care, support and friendship throughout the course of a child’s illness and continuing after their death. The strong bonds formed between the child’s family and the children’s hospice staff are of enormous value and support after the child has died.
Children’s hospice services tailor their care to the families’ needs and wishes. Parents are encouraged to have a rest when they stay at a children’s hospice, but it is also an ideal opportunity for them to spend time with their children without having to worry about relentless care needs and responsibilities. Children’s hospice care teams take over this care, enabling parents to enjoy quality time with their children or on their own. Families can retreat to this haven to be cosseted, nurtured and to recharge their batteries, enabling them to return home and take up their responsibilities with new vigour.
Children’s hospice services do not assume to provide all the answers, rather to accept the wishes and beliefs of children and parents alike. They are places to laugh and cry; to be silly or contemplative; to be quiet or loud; all the ever-changing emotions of children, and their parents, are encouraged. Children’s hospices are bright, airy, cheerful places, often full of fun and laughter, which are about being a child and making the most of life above and beyond anything else.
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