Every child shall be treated with dignity and respect and shall be afforded privacy whatever the child's physical or intellectual ability.
Parents shall be acknowledged as the primary carers and involved as partners in all care and decisions involving their child.
Every child shall be given the opportunity to participate in decisions affecting his or her care, according to age and understanding.
An honest and open approach shall be the basis of all communication.
Information shall be provided for the parent, the child, the siblings and other relatives, appropriate to age and understanding.
The family home shall remain the centre of caring whenever possible. Care away from home shall be provided in a child-centred environment by staff trained in the care of children.
Every child shall have access to a 24-hour multi-disciplinary children's palliative care team for flexible support in the home, and be in the care of a local paediatrician.
Every child and family shall receive emotional, psychological and spiritual support to meet their needs. This shall begin at diagnosis and continue throughout the child's lifetime, death and in bereavement.
Every family shall be entitled to a named keyworker who will enable the family to build up and maintain access to an appropriate network of support.
Every family shall be given the opportunity of a consultation with a paediatric specialist who has particular knowledge of the child's condition.
Every family shall have access to flexible short term breaks (respite care) both in their own home and away from home, with appropriate children's nursing and medical support.
Every child shall have access to education and other appropriate childhood activities.
The needs of adolescents and young people shall be addressed and planned for well in advance.
Every family shall have timely access to practical support, including clinical equipment, financial grants, suitable housing and domestic help.
