Quality standard

Quality statement 4: Coordination of care and support

Quality statement 4: Coordination of care and support

Quality statement

Autistic people are offered a named key worker to coordinate the care and support detailed in their personalised plan.

Rationale

Autistic people have broad and varied needs, and their care can involve services from a number of providers. Autistic people 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

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

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

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service protocols.

Process

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

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

Denominator – the number of autistic people with an agreed personalised plan.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records.

What the quality statement means for different audiences

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

Autistic people 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.

Definitions of terms used in this quality statement

Named key worker

For autistic children and young people, 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 NICE's guideline on autism spectrum disorder in under 19s: support and management, recommendation 1.1.4; and NICE's guideline on autism spectrum disorder in adults: diagnosis and management, recommendation 1.8.7; and expert opinion]