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Nursing for terminally ill children let down by lack of resource

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Terminally ill children are being let down by a lack of staff, training and resources in community health settings, nurses have warned.

While almost all children’s nurses work with infants, children and young people with limited life expectancy each year, half warn they lack the time, skills and resources to deliver the right levels of palliative care for children.

A survey of children’s nurses conducted by the Royal College of Nursing found many children were not being given the choice to die at home because there are not enough trained staff to provide 24/7 care in the community.

“Children should have the right to die at home if they wish to”

Peter Carter

Almost a third of children’s nurses surveyed, 31%, said they did not have the resources to deliver adequate care in the home setting, and 57% reported having had to send a child to a hospice who had asked to die at home.

A lack of training was also making a significant impact, the survey found, with 20% of respondents having never received any specific training in the issue and others thought what they had been told was insufficient.

Consequently, 24% said they are unable to provide symptom management care at home, and 31% said they lacked the confidence to discuss end-of-life options with children and their families. Overall, 36% said that their lack of training prevented them from offering the child the choice to die in the home setting.

The survey of members of the RCN Children and Young People’s Forums took place between January and March 2015, receiving 438 responses. The results were revealed on Tuesday at RCN Congress in Bournemouth.

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,” he said. “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.

“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,” he added.

  • 2 Comments

Readers' comments (2)

  • The problem is that many of these palliative care packages are being staffed by unqualified carers and rely on the District Nursing teams / Community teams to attend ad hoc to provide the non-delegated nursing care. As the child's needs increase and nursing care is needed around the clock, reliance on a Mon-Fri, 9-5 service is just not an option. My own view is that there should be 24 hour community-based childrens' palliative care teams, made up of a core of qualified and unqualified staff, with their own bank staff and also tapping into the local Hospital bank. This way, care can be stepped-up as needed to enable these children to stay at home.

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  • michael stone

    I'm far from convinced that community EoL is in good shape whoever is dying - but it is even more complicated, for children.

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