Analysis

Fulfilling every child’s right to good palliative care

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

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

    • The team of three delivered more than 90 education sessions between 2015 and 2017

    Children in Scotland's (CIS's) evaluation found that the country’s three Diana Children’s Nurses (DCNs) have brought about positive change for families, improved advanced planning and demonstrated leadership at national and local levels since their inception in 2014.


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

    The nurses are employed by charity Children’s Hospices Across Scotland and funded by the Diana, Princess of Wales Memorial Fund.

    Based in NHS services, the DCNs work directly with families to support the palliative care needs of children and enhance workforce capacity by training staff in the palliative care available for children. They increase access to specialist support, empower families to make choices and provide emotional support.

    They also provide strategic leadership to influence policy and implement change at organisational, health board and national levels to improve palliative care for the more than 15,400 children with a life-limiting disease in Scotland.

    15,400

    Number of children with life-limiting conditions in Scotland

    A report on the evaluation of the DCNs' work found that support had been provided to almost 240 parents and children in the two years up to March 2017.

    Families described ‘regaining a sense of control in desperate circumstances, making positive memories with their children, and receiving valuable emotional support’, the report states.

    Limitations

    Jeanette Hawkins, assistant director of NHS partnerships at cancer charity CLIC Sargent, says end of life care can be difficult to provide and choices to families can be limited.

    ‘The number of children requiring palliative and end of life care in the UK is low, but the impact on families is lifelong and devastating,’ she says.

    ‘For any rare condition or care need, it becomes challenging for the NHS to provide access to specialist services in every location, especially for end of life care at home.’

    The CIS evaluation suggested that DCNs had been successful in supporting some families to achieve their preferred place of care and helped to develop guidance to support parents wishing to take their child home after their death.

    Capacity issues

    Training other staff members on the importance of good palliative care is a vital part of the DCNs work, and they delivered more than 90 education sessions from 2015 to 2017.

    But the study found gaps in the service. DCNs have insufficient capacity to respond to the needs of families and services, have problems ensuring equity of access and also face resistance from some staff.

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

    Case study

    Caroline Porter, Diana Children’s Nurse at the Royal Hospital for Children, Glasgow, describes her passion for improving the experience of families at the most difficult point of their lives.

    ‘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,’ she says.

    Having worked in intensive care, a hospice and the community, she understands the importance of encouraging services to work together.

    ‘An important part of the role is trying to join up these services and keep communication routes open,’ she says.

    Ms Porter frequently visits the intensive care unit to identify children that may need palliative care and offer parents choices on how and where it 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 feel they have been involved in the planning and decision-making, we can have a positive impact on the parents and their grief.’

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