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Improvements needed for how newborn babies and infants with complex health problems are cared for

7 July 2016
  • Public

We have published a thematic review, which explains our findings of how newborn babies and infants with complex health conditions are cared for in hospitals and in the community.

Our review focused on three areas of care; the detection of health problems during pregnancy through screening; the diagnosis and management of newborn babies with deteriorating medical conditions, (with a particular focus on high blood pressure) and the management of infants requiring respiratory support in the community.

Our review draws on one particular case that had a tragic outcome for a baby and her parents. Elizabeth Dixon was born prematurely but suffered brain damage as a result of missed high blood pressure. She died shortly before her first birthday in 2001, when there was a failure to correctly maintain her tracheostomy tube. While our review was not an investigation of the specific circumstances of Elizabeth's case, we drew on this to examine current practice, systems and guidance.

As part of the review, we visited 19 NHS acute hospital trusts, and sourced information from 16 clinical commissioning groups (CCGs) and eight long-term ventilation network leads working in the community. Also, we spoke to 10 parents or guardians of children with respiratory support needs living at home and receiving care in the community.

Although the report highlights many of examples of good practice in each area, we found variation nationally, potentially due to the lack of national guidance about the management of at-risk babies and infants, and inconsistent processes to communicate information from one specialty team to another.

In our report, we make a number of recommendations to address these inconsistencies and to support providers to ensure high quality care across the country.

These recommendations supported by the National Institute for Health and Care Excellence (NICE), the Royal College of Nursing (RCN), the Royal College of Paediatrics and Child Health (RCPCH), the Royal College of Midwives (RCM) and the British Association of Perinatal Medicine (BAPM), as well as a number of other organisations that provided expertise and advice to CQC's review.

Our thematic review 'Identifying and managing clinical risks in newborn babies and providing care for infants in the community who need respiratory support' is at

Last updated:
29 May 2017