Young people receiving health or social care should be at the heart of decisions about their future in order to prevent them becoming lost in transition, according to the National Institute for Health and Care Excellence (NICE).
New health and social care guidance from NICE aims to improve support for thousands of young people receiving health or social care as they become adults. The independent committee of experts who developed the guideline found that support for young people moving from children’s to adults’ services can often be patchy and inconsistent.
Research has found that poor transition 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 transition 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 or deteriorating physical health.
‘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 seven years. There were 69,540 looked after children at 31st March 2015, an increase of 1% compared to 31st March 2014 and an increase of 6% compared to 31st March 2011.
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.
The Chair of the guideline committee, Professor Swaran Singh, 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 to adult systems creates a further layer of complexity.
‘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 the Care Quality Commission From the Pond into the Sea, published in June 2014, found that a system-wide change was needed to stop vulnerable young people from falling between gaps in services.
The full NICE guideline Transition from children’s to adults’ services for young people using health or social care services is available on the NICE website here.