Children’s Hospices Across Scotland is improving delivery of and access to palliative care through its work in hospitals and communities and the approach should be extended across Scotland, states an independent report published on 22 November 2017 by Children in Scotland.

CHAS is Scotland’s national children’s hospice service and since 2014 has employed three nurses to work in hospitals and communities in Glasgow, Edinburgh and the north of Scotland, as it identified the need for a permanent, national and integrated approach children’s palliative care across Scotland.

The independent report, An Evaluation of the Diana Children’s Nurse Service, commissioned by the charity, looked at the success  from 2015-2017 and found that the nurses supported families to make informed choices on their child’s care and end of life, ensuring there was on-going support for families to services they would not otherwise have accessed, including bereavement support.

The report further states the nurses have increased understanding and confidence amongst NHS staff of children’s palliative care and also influenced national and local policy to ensure consistent delivery of and access to children’s palliative care across Scotland, including ensuring the development of national anticipatory care plans (which support individuals in making decisions about their care and end of life) also supported babies, children and young people

The report 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 2016/17 and they delivered over 91 training courses (36 in 2015/16 and 55 in 2016/17, a 52% increase)  to increase understanding, skills and confidence in children’s palliative care across health and social care.

They also helped to deliver consistent policies and approaches to palliative care, including developing guidance, which has been shared nationally, to support parents wishing to have their baby or child at home after he or she has died.

The report concluded: “Capacity should be increased to enable DCN specialisms or nurses with similar skills to roll out across the whole country, and address some of the logistical challenges of working in the North of Scotland, and within other specialisms across the other areas of Scotland.”

Sue Hogg, Director of Children and Families at CHAS, said the report confirmed that CHAS’ commitment to further increasing its work directly with NHS and in communities across Scotland is 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. 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. This report will allow us to work with our partners to identify where CHAS’ expertise and services are best placed to ensure every child and family has access to palliative care when they need it.”

Fiona McQueen, the Scottish Government’s Chief Nursing Officer, 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.”

Jack Edmond, and his parents Nicola and Bruce, were one of the families supported by the DCNs. He was diagnosed with a rare, life-shortening genetic condition shortly after birth.

Bruce Edmond said:

“Shortly after his diagnosis, a CHAS Diana Children’s Nurse came to talk with us in our local hospital. That meeting was to change the course of Jack’s life and how we as a family would deal with it. Through talking with her, it became clear to us that whilst Jack was going to die, he still had so much living to do. After receiving such devastating news, we started to see a future, we could see things that we could achieve.”

In 2015 the Children in Scotland Requiring Palliative Care Study was commissioned by CHAS and the Scottish Government and showed that there are 15,400 babies, children and young people in Scotland with a life-shortening condition and that three will die each week. The two reports are the first studies of their kind into children’s palliative care and are developing understanding for CHAS on how it can best deliver its services across Scotland to reach every family.

An Evaluation of the Diana Children’s Nurse Service Report is available at

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