The National Institute for Health and Clinical Excellence (NICE) clinical guideline on providing palliative care to seriously ill babies, children and young, entitled End of Life Care for Infants, Children and Young People: Planning and Management, describes the care and support that children with life-limiting conditions – and their families – should expect to receive from the point at which their needs are recognised until the end of their lives.
Together for Short Lives played an active role in shaping the guidance and associated Quality Standard – which were published in 2016 and 2017 respectively. In collaboration with Martin House Children’s Hospice we ran three focus groups across England with children and young people with life-limiting and life-threatening conditions, the findings of which were used extensively by NICE in developing this guideline. Significantly, NICE recommends that:
- The child and their family should play an active role in discussions about their care.
- Where possible, the child should receive palliative care, including end of life care, in the place they choose.
- Children with life-shortening conditions should be cared for by a multidisciplinary team who meet regularly to discuss the child’s care.
Implementing the standard
We are now actively working with NHS England to support the implementation of the NICE Guidelines and Quality Standard.
As part of this work we completed a national audit to understand how well placed the children’s palliative care sector was to meet the guideline recommendations in providing high quality, equitable palliative and end of life care. This revealed a high degree of variation across the country. To help the sector learn we have developed a bench marking exercise for local palliative care networks to assess their progress against the NICE Guidelines and Quality Standard .
To support this we have created a compendium of the practical solutions to care challenges that have been developed across the sector. We hope that the networks continue to add to this compendium, as they address problems, develop new solutions and share that learning with others to improve systems and services to benefit children, families and those that support them.