Why transition from child to adult services needs a major overhaul

Two reports highlight the poor transition experience and lack of a clear pathway, and children and their families must be at the heart of any significant change

How often have you heard, read or even spoken the words: ‘We must keep children and their families at the heart of everything we do?’

• RELATED: Effective transition of young people with long-term conditions into adult services

Two recent publications cast a critical eye over the experience of young people with complex health needs as they transition from children’s to adult services.

The Inbetweeners, published by the National Confidential Enquiry into Patient Outcomes and Death, was based on a review of almost 500 sets of health records of children, aged between 14 and 21 years, receiving NHS care in the period October 2019 and March 2021. Questionnaires were sent to NHS hospital and community care providers in England, Wales and Northern Ireland, and detailed case reviews of the anonymised health records were undertaken by a panel of expert multidisciplinary reviewers.

• RELATED: Preparing young people with complex needs and their families for transition to adult services

Sadly, the review confirmed the findings of the Care Quality Commission’s 2014 report, From the Pond Into the Sea, that for many young people there is no clear transition pathway and that, more often than not, the process of transition and subsequent transfer to adult services is fragmented.

Key markers of good practice in children’s and adult services were missed

The second report, Survey Results: Young People’s Experience of Transition to Adults’ Services, published by WellChild, was based on the self-reported experience of 86 young people with complex needs and their parents.

A total of 70% of respondents described their overall experience of transition as poor, with a similar proportion reporting that not only were they not given a chance to meet the adult teams to which they were transitioning, but that they did not have an allocated key worker. Each of these are key markers of good practice as identified by the National Institute for Health and Care Excellence.

• RELATED: How a dedicated nurse helped bridge the gap between children’s and adult services

The key message in each of these reports is the need for a major overhaul of children’s and adult services which consistently deliver a poor transition experience. And the voices of children and their families must be at the heart of that review.

Further information

• Care Quality Commission (2014) From the Pond into the Sea: Children’s Transition to Adult Health Services
• National Confidential Enquiry into Patient Outcome and Death (2023) The Inbetweeners
• National Institute for Health and Care Excellence (2016) Transition from Children’s to Adults’ Services for Young People Using Health or Social Care Services
• WellChild (2023) Survey Results: Young People’s Experience of Transition to Adults’ Services

Mark Whiting is co-consultant editor of Nursing Children and Young People