Quality statement 4: Coordination of care and support

Quality statement

People with autism are offered a named key worker to coordinate the care and support detailed in their personalised plan.

Rationale

People with autism have broad and varied needs, and their care can involve services from a number of providers. People with autism will need different levels of care and support, as detailed in their personalised plan, and a named key worker can help to ensure that they receive an integrated package of care. If a young person or adult, or a parent or carer on behalf of a younger child, accepts the offer of a named key worker to help coordinate their care, they should be involved in the decision about which professional is the most appropriate to provide that support.

Quality measures

Structure

Evidence of local arrangements for people with autism to be offered a named key worker to coordinate the care and support detailed in their personalised plan

Data source: Local data collection.

Process

The proportion of people with autism who are having the care and support detailed in their personalised plan coordinated by a named key worker.

Numerator – The number of people in the denominator who are having their care and support coordinated by a named key worker.

Denominator – The number of people with autism with an agreed personalised plan.

Data source: Local data collection.

What the quality statement means for service providers, health and social care practitioners, and commissioners

Service providers ensure that they have sufficient staffing capacity and protocols in place with local partners to offer all people with autism a named key worker to coordinate the care and support detailed in their personalised plan.

Health and social care practitioners ensure that they offer all people with autism a named key worker to coordinate the care and support detailed in their personalised plan.

Commissioners from across health, social care and education agencies commission services in which all people with autism are offered a named key worker to coordinate the care and support detailed in their personalised plan.

What the quality statement means for service users and carers

People with autism are offered the chance to have a named 'key worker' – that is, a health or social care practitioner who will coordinate the care and support that is set out in their personalised plan. If they agree to having a named key worker, they are involved in deciding who that person will be.

Source guidance

  • Autism: the management and support of children and young people on the autism spectrum (NICE clinical guideline 170), recommendation 1.1.4

  • Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142), recommendation 1.8.10

Definitions of terms used in this quality statement

Named key worker

For children and young people with autism, the named key worker may be a member of the autism team, or someone from local community services identified by the autism team and the child or young person and their family and carers as being suitable to coordinate their care and support. Adults receiving care from the autism team should also have a named key worker. For adults not receiving care from the autism team, mental health or learning disability services, the key worker could be a member of the primary healthcare team.

Once someone has been diagnosed with autism, a named key worker should ensure that the person's personalised plan is implemented and reviewed as their circumstances and needs change. This should include ongoing responsiveness to changing needs, and in particular supporting the transition for young people as they move to secondary school, approach young adulthood and move from child to adult services.

[Adapted from Autism: the management and support of children and young people on the autism spectrum (NICE clinical guideline 170), recommendation 1.1.4; and Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142), recommendation 1.8.7; additional information based on the expert opinion of specialist committee members]