Transition arrangements for young people with complex health needs from children’s to adult services

This themed review looked at the arrangements made for children with complex health needs as they move from children's to adult services.

The transition process can be a vulnerable time for young people and their families. During this period, they stop receiving health services that they may have had since a very young age (which can include care to support mobility, breathing, swallowing or pain) and move on to equivalent adult services which can be structured and funded differently.

There are more than 40,000 people aged under 18 in England who 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.

Our findings

We found that young people who have physical disabilities or illnesses are not always receiving the necessary care and support they need when they move on to adult care services.

Some of the problems we found include:

• some children's services stopping the care they provide before the equivalent adult services have started.
• families feeling confused and distressed by the lack of information and support given to them.

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.

What next?

We have set four priorities.

1. Commissioners and providers must listen to, involve and learn from young people and their families and understand what they want from their care.
2. Existing national guidance must be followed so that young people are appropriately supported through their transition.
3. GPs should be more involved at an earlier stage in planning for transition.
4. Services must be tailored to meet the needs of young people transferring from children’s health services and include extra training for health care staff in caring for young people.

As part of our new approach to inspection, we will investigate transition arrangements when we visit primary and community health care services.

Our findings will be reflected in the overall rating (Outstanding, Good, Requires Improvement or Inadequate) that we will award to services.

More information about this review

During this review, we:

• gathered experiences from young people between the ages of 14 and 25 who have experience of the transition process and their parents.
• approached 100 clinical commissioning groups (CCGs) to connect with young people who have complex physical health needs.
• involved health care professionals and commissioners who are involved in providing care during the transition process.
• inspected 23 services that provide care for people during and following the period of transition.