24 February 2016

Place young people moving into adult services at the heart of decisions about care

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.

Watch Thines Ganeshamoorthy, a service user and member of the group that developed the guideline, talks about his experience of the transition from children's to adult services.

Use a person-centred approach for transition 

One principle that underpins the guideline is a person-centred approach when supporting a young person through the transition process.

This means that health and social care professionals should see young service users as an individual and an equal partner who can make decisions about their own choices.

The young person should be fully involved in terms of the way care is planned. Transition support should also cover areas such as education and employment, community inclusion, health and wellbeing and independent living.

Listen to Carrie Wilson talk about her experience of fragmentary care, and how the guideline might help improve practice.

Identify a single named worker to coordinate care and support

Cases where a young person sees a number of health and social care professionals can lead to a disjoined and fragmentary experience of care.

As a result, NICE recommends that young people should be helped to identify a single practitioner who should act as a named worker to coordinate care and support.

The named worker could be from a range of professions, such as nurse, youth worker, an allied health professional, a named GP, or an existing keyworker. Above all, they should be someone with whom the young person has a meaningful relationship.

‘No excuse for people not receiving the care they need’

Professor Gillian Leng, deputy chief executive and director of health and social care at NICE, said: “Without proper support, young people may not engage with adult services and can be lost to the health and social care system at a time when they are at a higher risk of psychosocial problems.

“This guideline will help to prevent young people from getting lost in transition. It will stop them falling through gaps in care, support them into adulthood and prevent longer term problems developing. It will improve young people’s lives, enhance services and save the NHS, local authorities and other providers valuable resources.”

Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission, added: "When we reviewed people’s experiences of transitioning from children’s to adult’s services, we found that while there are many committed professionals who provide excellent care, there clearly still needs to be a system-wide change.

"It is unacceptable that young people and their families are being excluded from planning and decision-making about their care and for them to be without essential services or equipment temporarily, while arrangements are resolved.

"Commissioners and providers of health and social care need to work together at every level. There is no excuse for people not receiving the care they need. Collectively, we need to stop young people with complex physical health needs from falling between gaps of care and not getting the support they need."

Collectively, we need to stop young people with complex physical health needs from falling between gaps of care and not getting the support they need.

Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission