Terminally-ill children are being let down by a lack of staff, training and resources in children’s community health services, the nurses' union has warned.
A survey of children’s nurses found that many young people are not being given the choice to die at home because there are not enough trained staff to provide 24/7 care in this setting, the Royal College of Nursing (RCN) said.
While almost all children’s nurses (97%) work with infants, children and young people with limited life expectancy each year, fewer than half (48%) said they have the time, skills and resources to deliver the right levels of palliative care for them.
Almost a third (31%) of children’s nurses said they do not have the resources to deliver adequate care at home, and more than half (57%) have had to send a child to a hospice who had asked to die at home.
Meanwhile a fifth (20%) said they have never received any specific training in this area, while one in 10 of those who had found it insufficient and almost one in three (31%) said they lacked the confidence to discuss end-of-life options with children and their families.
Dr Peter Carter, chief executive and general secretary of the RCN, said: "It is an absolute tragedy when a child is terminally ill, and nurses will to do everything they can to ease the process for both the child and their family.
"Children should have the right to die at home if they wish to. However, without the right levels of time and resources, it is impossible for nurses to provide this choice as they are unable to deliver the specialist care needed.
"As nearly all children’s nurses care for terminally-ill children, specific training is needed so that children’s nurses have the right skills to deliver high standards of tailored, end-of-life care.
"Every child should have the right to choose where they spend their last days, whether this is in hospital, a hospice or at home with their family."