Young people who are moving from children's to adults' services should be placed at the heart of decisions about their care, NICE says.
Latest social care guidance aims to improve and standardise the support for young people who are receiving health or social care as they become adults by ensuring care is more person-centred.
More than 40,000 people under the age of 18 in England have complex physical health needs, caused by physical disabilities, special education needs or life-limiting or life-threatening conditions.
As they enter adulthood, many will undergo the transition from receiving child to adult services. The Department of Health, has previously called for this transition to be a planned and managed process, where health and social care professionals collaborate to support a young person through the transition.
However, too often this process falls short of expectations, leading to difficulties and anxiety among young people and their carers.
A 2014 report from the CQC found that only half of young people had received support from a lead professional during the process running up to transition to adult services. Furthermore, young people and families often felt confused and distressed by the lack of information, support, and services available to meet complex health needs.
An NHS Diabetes report of 2012 also suggests that effective processes are urgently needed, since professionals do not feel they handle transitions well enough and there is no clear model for what is effective.
NICE’s latest guideline aims to improve this transition process by making sure young people are supported and in involved in decisions before, during and after the transition takes place.
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