Together for Short Lives, the national association for children’s palliative care in the United Kingdom, has welcomed the publication of new guidelines from the National Institute for Health and Clinical Excellence (NICE) which describe the care and support that children with life-limiting conditions – ant their families – should expect to receive from the point at which their needs are recognised until the end of their lives.
The guideline, entitled End of Life Care for Infants, Children and Young People; Planning and Management, was published on 7 December and is available to download from the NICE website.
The purpose of the guideline is to inform commissioners and providers, children and young people with life-limiting conditions and their families and carers, health and social care professionals and all other professionals involved in caring for infants, children and young people with life-limiting conditions, such as educators and clergy.
Together for Short Lives reports that they played an active role in shaping the guideline, and in collaboration with Martin House Children’s Hospice,ran three focus groups across England with children and young people with life-limiting and life-threatening conditions to inform the eventual development of the publication.
As a result of these consultations, significant enhancements have been made to the guideline, including recommendations to ask the child who they would like to be involved in discussions about their care, stressing the importance of parallel planning so families and professionals are prepared for a change in the course of the child’s condition, including neonatal medical teams in care planning for a child if there is an antenatal diagnosis of a life-limiting condition and recognising the importance of managed clinical networks in delivering high-quality coordinated children’s palliative care.
Despite these improvements, Together for Short Lives expresses concern that the guideline development process highlighted the lack of an adequate evidence base available for NICE to draw upon to inform the clinical guidance. We look forward to working closely with NICE and partners within the children’s palliative care sector to ensure that such research is developed to underpin the development of any future guidelines.
Commenting on the publication of the guideline, Together for Short Lives CEO, Barbara Gelb noted that services available to children with life-limiting conditions still vary hugely from area to area and she encourages commissioners in England to priorities children’s palliative care in their strategic planning.
Click here to read the full article on the Together for Short Lives website.