9 June 2014

NICE Guidance to Help Tackle Transition From Children's to Adult Services

NICE is developing guidance to help tackle the gaps in care sometimes experienced by young people with health needs, as they move from children's to adult services.

More than 40,000 people in England aged under-18 have complex health needs caused by physical disabilities, special education needs, or life-limiting or life-threatening conditions.

Such young people often rely on a range of therapies and treatments, which can get complicated as they move from children's and adult services.

This move, known as transition, is a vulnerable time for young people and their families. This is because they may stop receiving services they have received since birth or at a young age, or they may lose continuity in care.

Today, a report published by the Care Quality Commission (CQC) on the transition process highlights many of the problems that often occur.

The report found that some families are confused and distressed by the lack of information and support given to them, that certain children's services stop before their equivalent services start, and that there is a general variation in people's experience across the country.

The report has four key recommendations, which include listening to young people and families and involving them in their care, ensuring GPs are more involved in planning for transition at an earlier stage, and ensuring services are tailored to meet the needs of young people in transition.

To address these issues, NICE is producing a guideline on the transition from children's to adult services, the scope of which is announced today.

The guideline will make recommendations that focus specifically on ‘what works' for young people in transition. Among the areas it will cover are:

  • activities to ensure that young people and their carers are involved in, and informed about, the way that their transitions from children's services are planned and delivered care planning, coordination and assessment
  • interventions to support effective transitions organisational frameworks for transition
  • training of staff working with young people in transition, in children's and adult services
  • joint working between children's and adult services
  • advocacy
  • barriers to, and facilitators of, good transition practice
  • improvement to adult services

Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE, said: "For many young people on the cusp of adulthood, moving between child and adult health and social care services can be a tumultuous and stressful time. NICE is developing practical guidance to supplement existing policy and help health and social care practitioners tackle this important issue."

She added: "It's vital that services work together and involve young people and their families and carers so that they receive consistent care and support.

"A poor transition between child and adult services can have a profound and long-lasting negative impact on a person's life, potentially affecting education and employment opportunities, as well as their long-term independence. The last thing we want is for young people to fall between the gap in child and adult services and not get the support or care they need."

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

"While our review found many committed professionals who provide excellent care, there needs to be a system-wide change, with commissioners and providers of health and social care working together at every level."