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Terminally ill children let down by poor end-of-life care

23 Jun 2015

Nurses from the Eastern region have expressed concerns about the standards of end-of-life care being given to children and young people

Nurses from the Eastern region have expressed concerns about the standards of end-of-life care being given to children and young people.

Research by the Royal College of Nursing (RCN) has found that terminally ill children are being let down by a lack of staff, training and resources in children’s community health services.

A UK-wide survey of children’s nurses found that many children are not being given the choice to die at home as there are not enough trained staff to provide 24/7 care in this setting.

Almost all children’s nurses (97%) work with infants, children and young people with limited life expectancy each year. However, fewer than half (48%) said they have the time, skills and resources to deliver the right levels of palliative care for children.

As a result, many children are not being given the choice to die at home. Almost a third (31.3%) of children’s nurses said they don’t have the resources to deliver adequate care in the home setting, and more than half (57%) have had to send a child to a hospice who had asked to die at home.

A lack of training is also having a significant impact. A fifth (20%) of children’s nurses said they have never received any specific training in this area, while one in ten of those who had found it insufficient.

Consequently, nearly a quarter (24%) said they are unable to provide symptom management care at home, and almost one in three (31%) said they lacked the confidence to discuss end-of-life options with children and their families.

More than a third (36%) said that their lack of training prevented them from offering the child the choice to die in the home setting.

Andrew Robinson, an RCN Eastern Region Board Member and paediatric nurse, said nurses working with children would welcome more training in end-of-life care.

 “I know myself and my colleagues would like to have more experience and training in working with children coming to the end of their lives as it is not a situation we are faced with very often,” he said.

“This makes it all the more important that when we do see children who are terminally ill we have the skills to deal with what is a very difficult situation.

“We have to be there for the child and the parents and it is vital we are able to provide the support they need.”

Claire Topham-Brown, an RCN steward from the Cambridgeshire branch, said: “These concerns are felt not just in child and adult end of life care but across all areas in the health service.

“Nurses often feel there are just not enough resources in place to help them do the job they want to do and do the best for their patients.

“These worries cut across all areas of care.”

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.

“Funding and resources are critical to ensuring that services have the right levels of fully trained staff to care for children and their families in these incredibly difficult situations. 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.”

Page last updated - 15/06/2018