Rare Diseases: Children
The question
To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of reviewing the clarity of escalation pathways for parents of children with complex medical needs.
Answered by Ashley Dalton
Integrated care boards (ICBs) in England are responsible for commissioning services to meet the health needs of their local population. ICBs are expected to follow guidance from the National Institute for Health and Care Excellence (NICE). In 2022, NICE published guidance on Disabled children and young people up to 25 with severe complex needs. This is available at the following link:
NHS England is rolling out Martha’s Rule in acute provider sites, which gives in-patients and their families or carers who are concerned about physiological deterioration the ability to initiate a rapid review of their case from someone outside of their immediate care team. When requested, this rapid review will inform whether any new or additional action needs to be taken to ensure patients receive the most appropriate care and treatment, which may include escalation.
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