New health and social care guidance from the National Institute for Health and Care Excellence (NICE) aims to improve support for thousands of young people receiving health or social care as they become adults.

Chaired by a University of Warwick academic, the independent committee of experts which developed the guidelines found that support for young people moving from children’s to adults’ services can often be patchy and inconsistent¹.

The chair of the guideline committee, Professor Swaran Singh, Warwick Medical School, University of Warwick said: “Adolescence is a turbulent period of intense and multiple transitions for many young people as they leave the security of home and embark on the journey to adulthood. For young people with health and social care needs, the additional transition from child adult systems creates a further layer of complexity.”

Research has found that poor transitions from children’s to adult services can lead to deteriorating health, disengagement with services, and broken relationships with health and social care professionals.

Poor management of transitions can affect young people who use a wide range of services including people with learning disabilities, those with a single long-term condition such as diabetes, those with complex health and social care needs, child and adolescent mental health service users, young people leaving residential care and young people with life-limiting conditions.

The guideline from NICE explains that the tens of thousands of young people receiving health or social care should be supported to make decisions about their futures. They should be involved, with their carers, in planning the transition between services as well as how the move is implemented and reviewed.

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. This guidance will improve young people’s lives, enhance services and save the NHS, local authorities and other providers valuable resources.”

The number of looked after children has increased steadily over the past 7 years. There were 69,540 looked after children at 31 March 2015, an increase of 1% compared to 31 March 2014 and an increase of 6% compared to 31 March 2011.²

More than 40,000 people aged under 18 in England have complex physical health needs, caused by physical disabilities, special education needs or life-limiting or life-threatening conditions. This covers over 300 conditions, such as cystic fibrosis, Duchenne muscular dystrophy, rare genetic disorders, cerebral palsy and multiple disabilities following spinal cord or brain injuries.³

Carrie Wilson, who was in care until 4 years ago and was a member of the independent guideline committee, said: “I was in foster care for 7 years and had 7 different social workers. Young people need to be put at the heart of the care they receive. This guideline will help to address gaps in the care system at an important time. I hope all those working with young people in health and social care will adopt these recommendations so we can give some of our most vulnerable people the continuity, support and security they need at a time of great change and risk.”

“We know that many young people need continuity of care and often additional support to ensure that they are prepared for this service transition, do not fall in the gap between services, and experience good ongoing care through the transition period. A poor transition can have long-lasting consequences, potentially affecting a young person’s independence, wellbeing, education and employment opportunities.

“We have known about the problem for a long time; these guidelines now offer a unique opportunity to improve our services and help our young people at a time of heightened vulnerability.”

A report by the Care Quality Commission (From the pond into the sea, June 2014), found that a system wide change was needed to stop vulnerable young people from falling between gaps in services.

Professor Steve Field, Chief Inspector of General Practice at the Care Quality Commission, said: "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.4

"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."

Tony Hunter, chief executive of the Social Care Institute for Excellence, said: “As the lead partner for the NICE Collaborating Centre for Social Care, it’s been really encouraging that co-production and collaboration was at the heart of its development and I hope that will model how it will be implemented in practice. We supported the participation of five young people and carers on the guideline committee, so those voices and perspectives have been really heard. What better way to help improve the experience of young people in transition than by bringing together the wide-ranging knowledge of experts by experience, practitioners and other experts to consider what works to make life better for young people; focussing on what’s positive and possible for them as individuals rather than a pre-determined set of options.”

Last year, NICE issued a new guideline (5) to help ensure children in care, and those at risk of going into care, are able to develop stable, secure relationships with the people who look after them.

24 February 2016

Notes to Editors

1. Transitions to Adult Services by Disabled Young People Leaving Out of Authority Residential Schools http://php.york.ac.uk/inst/spru/pubs/1195/Beresford and Cavet, University of York 2009.

2. Children looked after in England including adoption: 2014 to 2015. Department for Education.

3. From the pond into the sea, June 2014. Care Quality Commission.

4. In 2014, the Care Quality Commission published a national report on the transition arrangements for young people with complex health needs from children’s to adult services. For further information about this, please visit: http://www.cqc.org.uk/ctas

About the guidance

5. The draft guidance/guidance will be available at http://www.nice.org.uk/guidance/ng43 from Wednesday 24 February 2015.

6. The guideline focuses on young people up to the age of 25 with health and/or social care needs, including those who have mental health problems, disabilities or who are looked after.

7. NICE will use #lostintransition on social media.

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For further details please contact Nicola Jones, Communications Manager, University of Warwick 07920531221 or N.Jones.1@warwick.ac.uk