Diana Children's Nurses are making a difference in palliative care

Specialist children’s nurses in Scotland are improving access to palliative care services and empowering families, an independent review has found

Specialist children’s nurses in Scotland have made a 'positive change', an independent review has found

  • Approximately 200 children with a life-limiting condition die each year in Scotland
  • Families reported finding a 'sense of control' and Diana Children's Nurses (DCNs) provide 'valuable emotional support'
  • DCNs are based in east, north and west Scotland

Picture: iStock

The review found that Scotland’s three Diana Children’s Nurses (DCNs) have brought about positive change for families, are improving advanced planning and demonstrating leadership at national and local levels.

Established in 2014, the nurses based in east, north and west Scotland, are employed by Children’s Hospices Across Scotland (CHAS) and funded by the Diana, Princess of Wales Memorial Fund.

The DCNs work with NHS services directly with families to support the palliative care needs of children and develop workforce capacity by training staff about palliative care for children. They also provide strategic influencing and leadership to steer policy and practice change at organisational, health board and national levels.


Number of children with life-limiting conditions in Scotland

More than 15,400 children had a life-limiting disease in Scotland in 2013-14, and about 200 children with a life-limiting condition die each year.

An evaluation of the DCNs’ work, carried out by national agency Children in Scotland, combined report of qualitative interviews with DCNs, CHAS staff, front-line staff and policymakers with family case studies and quantitative monitoring evidence.

Researchers found that support had been provided to a total of 239 parents and children in the two years up to March. The number increased last year by 46%, with 97 people helped in 2015-16 and 142 in 2016-17.

Families 'regained a sense of control'

The study found that the type of direct clinical work DCNs undertake is varied and complex and includes increasing access to specialist support, empowering families to make choices about care and end of life, and providing emotional support.

In the three case studies in the review, families described ‘regaining a sense of control in desperate circumstances, making positive memories with their children, and receiving valuable emotional support’.

The study results suggest that DCNs have been successful in supporting some families to achieve their preferred place of care and helped to develop guidance, which has been shared nationally, to support parents wishing to have their babies or children at home after they die.

But the hospital is still the most common place of death, particularly for babies.


Number of Diana Children’s Nurses

Value of care planning ahead

Training other staff on the importance of good palliative care is a vital part of the DCNs’ work. They delivered a total of 91 training sessions to more than 2,000 staff from a range of professions and students in the two years up to March.

The nurses have also highlighted the value of anticipatory care planning and the use of Children and Young Persons Acute Deterioration Management forms. In addition to carrying out anticipatory care planning with families, DCNs have helped to train and support staff to undertake this planning, through role modelling and education sessions.

Palliative care needs in Scotland

More children and young people of all ages in Scotland with life-limiting conditions should have input from palliative care services, a major study concluded.

The Children in Scotland Requiring Palliative Care: Identifying Numbers and Needs report by the University of York, published in October 2015, states that children under the age of one should be a priority. More than 90% of children in this age group who die do so in hospital.

In the future, palliative care services in Scotland should ensure that children and young people from areas of high deprivation have priority access to services.

Read the report


Improving communication and coordination between third-sector hospice services and NHS community and acute services is also an important element of their care that improves patient experience.

But, while there have been improvements, there are still gaps in the service, the study found. Among the barriers that DCNs have faced was having too little capacity to respond to the needs of families and services, too little access to other services 24-hours a day and resistance from some staff, particularly medical consultants. Balancing all the different elements of the job can be challenging, the report suggests.

The report concludes: ‘Capacity should be increased to enable DCN specialisms or nurses with similar skills to roll-out across the whole country.’

‘The value of the posts is being recognised as we hoped it would’

Katrina McNamara

CHAS's director of children and families Sue Hogg says: ‘This report shows we are providing the right support to those who need us – families and healthcare providers, and this is evidenced by families and staff.’

Director of service development and improvement at palliative care charity Together for Short Lives Katrina McNamara helped set up DCN services across the UK after the princess’s death in 1997. Different models were used in England, Scotland, Wales and Northern Ireland in accordance with local need.


Number of parents and children supported

This latest report provides valuable evidence supporting the approach taken by Scotland’s DCNs. ‘The value of the posts is being recognised as we hoped it would,’ she says.

‘They are working directly with families to offer real choice and see the opportunities of developing areas such as anticipatory care planning. They are also working to link care teams in hospitals, hospices and the community to help with continuity of care, and carry out an education role as well.’

While the DCNs carry out vital work, palliative care services across the UK remain generally under-resourced as demand continues to grow, Ms McNamara says. Issues such as 24-hour availability of services are difficult in many areas.

‘My sense is that the Scottish Government is listening and talking to service providers, and trying to improve care and the arrangements for care, in a way that perhaps isn’t happening in England,’ she adds.

Read the Children's Hospices Across Scotland report

Case study

Caroline Porter is the Diana Children’s Nurse based at the Royal Hospital for Children in Glasgow

‘What we are trying to do all the time is develop services and highlight that palliative care must be seen as a core service, and not an add on,’ Ms Porter says. ‘As a nurse for 30 years, the clinical work with families is the area that I most love doing.’

With a background that includes working in intensive care, a hospice and the community, she understands the importance of encouraging services to work together, she says. ‘An important part of the role is trying to join up these services and keep communication routes open.’

Diana's Children Nurses Fiona Reid, Caroline Porter and Evelyn Rodger. Picture: David Johnstone

Scotland’s three Diana’s Children Nurses are spread out geographically, and have different specialist areas. Ms Porter focuses on intensive care and haemato-oncology, while her colleague, Evelyn Rodger, based at the Royal Infirmary of Edinburgh, focuses on neonates with complex palliative needs and those approaching end of life. Fiona Reid covers the north of Scotland; her main area is community practice.

Ms Porter frequently visits the intensive care unit to discuss all children that may need palliative care and ways of offering their parents' choices on how and where their care is provided.

‘Good palliative care should be a right,’ she says. ‘The death of a child is perhaps the worst thing that will ever happen to someone but, if they know they have been involved in the planning and decision-making, we can positively impact on the parents and their grief.

'If we cannot change the fact that a child is going to die, we can look at how we can make little bits of that better.’


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