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Children’s palliative care ‘Diana’ nurses should be extended across Scotland

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A paediatric palliative care model pioneered by a hospice charity in Scotland should be extended across the country, according to a new report.

The charity, Children’s Hospices Across Scotland (CHAS), has employed three nurses to work in hospitals and communities in Glasgow, Edinburgh and the North of Scotland since 2014.

“This report shows the real impact Diana nurses have had in improving care for families”

Fiona McQueen

The charity hired the three so-called “Diana children’s nurses” after it said it identified the need for a permanent, national and integrated approach children’s palliative care across Scotland.

An independent report, commissioned by the charity and published today, looked at the achievements of nurses in 2015-17 and concluded the approach should be extended across Scotland.

The report, by the national agency Children in Scotland, highlighted a 46% increase from 2015-16 to 2016-17 in the number of children and families supported by the nurses, from 97 in the first year to 142 in the second.

Meanwhile, they delivered over 91 training courses – 36 in 2015-16 and 55 in 2016-17 – to increase understanding, skills and confidence in children’s palliative care across health and social care.

It said the nurses supported families to make informed choices on their child’s care and end of life, ensuring there was ongoing support for them to access services they would not otherwise have done so, including bereavement support.

The report – titled An Evaluation of the Diana Children’s Nurse Services – also stated that the nurses had increased understanding and confidence among NHS staff of children’s palliative care.

“We are continually working to increase our understanding of children’s palliative care needs”

Sue Hogg

In addition, they had influenced national and local policy to ensure consistent delivery of, and access to, children’s palliative care across Scotland, including ensuring that the development of national anticipatory care plans also supported babies, children and young people.

The report also noted that the nurses helped to deliver “consistent” policies to palliative care, such as developing guidance to support parents wishing to have their baby or child at home after death.

“Capacity should be increased to enable Diana children’s nurse specialisms or nurses with similar skills to roll out across the whole country,” stated the report.

Sue Hogg, director of children and families at CHAS, said the report confirmed that the charity’s commitment to increasing its work across Scotland was helping to improve children’s palliative care.

“The Children in Scotland report shows we are providing the right support to those who need us – both families and health care providers, and this is evidenced by families and staff,” said Ms Hogg.

“As Scotland’s national children’s hospice service, we are continually working to increase our understanding of children’s palliative care needs and how we can address them,” she said.

She added that the report would allow the charity to identify where its expertise and services were “best placed” to ensure every child and family had access to palliative care if it was needed.

Scottish government

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Fiona McQueen

Fiona McQueen, chief nursing officer for Scotland, said: “This report shows, not only the value of palliative care for children in Scotland, but the real impact Diana nurses have had in improving care for families at such a critical point in their lives.”

In 2015 the Children in Scotland Requiring Palliative Care Study was commissioned by CHAS and the Scottish government. It found there are 15,400 babies, children and young people in Scotland with a life-shortening condition and that three would die each week.

The two reports together are developing understanding for CHAS on how it can best deliver its services across Scotland to reach every family, said the charity.

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