This week NICE (National Institute for Health and Care Excellence) released guidance about improving palliative care by supporting the whole family during a child’s end of life. Shooting Star Chase champion this family-centred approach to caring for children with life-limiting conditions and Director of Care, Helen Sibley, has responded to the guidance by saying:
“Shooting Star Chase wholeheartedly support NICE’s guidance highlighting the importance of caring for the entire family during a child’s death. At Shooting Star Chase we pride ourselves on our family-focused approach and whether it’s at our hospices or in the community. We believe as well as providing first-class care for a child with a life-limiting condition who has come to the end of their life, it’s imperative parents, siblings and extended family are given support at a time so difficult, most of us find it hard to imagine. We offer families a range of care during end of life and throughout bereavement so they receive comfort, are supported through grief, and can remember their loved one in the best way possible.
“In line with NICE’s recent recommendations, Shooting Star Chase’s end-of-life support includes Hospice at Home so families get the help and advice they need if they wish to remain at home; supported children and siblings access art, play and music therapies tailored to their specific needs and understanding; and our palliative care team prepare an end-of-life care plan in close consultation with the family, which is regularly reviewed and updated with any changes the family wish to make. The charity is also conducting its own research into accurately identifying when a child with a life-limiting condition is likely to die to give families more time to prepare.
“But caring for the whole family at the end of a child’s life is not just about practical and emotional support. Shooting Star Chase also provides opportunities for families to create special memories. At Christmas, for example, the charity arranges Christmas parties for all ages and abilities, wheelchair-accessible ice-skating and presents for supported children and siblings to give families a Christmas to remember – as for some, this will be their last one together.”