NICE Guidance on the Organisation and Delivery of Care to Adults on the Autism Spectrum

The following extracts are from "Autism in adults: diagnosis and management." (2012). London: NICE.

Organisation and Delivery of Care

Developing local care pathways Local care pathways should be developed to promote implementation of key principles of good care. Pathways should be:

  • negotiable, workable and understandable for adults with autism, their families, partners and carers, and professionals
  • accessible and acceptable to all people in need of the services served by the pathway
  • responsive to the needs of adults with autism and their families, partners and carers integrated so that there are no barriers to movement between different levels of the pathway
  • outcome focused (including measures of quality, service user experience and harm) Adapted from Common Mental Health Disorders: Identification and Pathways to Care (NICE, 2011b). Autism strategy groups should be responsible for developing, managingand evaluating local care pathways. The group should appoint a lead professional responsible for the local autism care pathway. The aims of the strategy group should include:

  • developing clear policy and protocols for the operation of the pathway
  • ensuring the provision of multi-agency training about signs and symptoms of autism, and training and support on the operation of the pathway
  • making sure the relevant professionals (health, social care, housing, educational and employment services and the third sector) are aware of the local autism pathway and how to access services
  • supporting the integrated delivery of services across all care settings
  • supporting the smooth transition to adult services for young people going through the pathway
  • auditing and reviewing the performance of the pathway The autism strategy group should develop local care pathways that promote access to services for all adults with autism, including:

  • people with coexisting physical and mental disorders (including substance misuse)
  • women
  • people with learning disabilities
  • older people
  • people from black and minority ethnic groups
  • transgender people
  • homeless people
  • people from the traveller community
  • people in the criminal justice system
  • parents with autism. When providing information about local care pathways to adults with autism and their families, partners and carers, all professionals should:

  • take into account the person's knowledge and understanding of autism and its care and management
  • ensure that such information is appropriate to the communities using the pathway The autism strategy group should design local care pathways that promote a range of evidence-based interventions at each step in the pathway and support adults with autism in their choice of interventions The autism strategy group should design local care pathways that respond promptly and effectively to the changing needs of all populations served by the pathways. Pathways should have in place:

  • clear and agreed goals for the services offered to adults with autism
  • robust and effective means for measuring and evaluating the outcomes associated with the agreed goals
  • clear and agreed mechanisms for responding promptly to identified changes to people's needs. The autism strategy group should design local care pathways that provide an integrated programme of care across all care settings. Pathways should:

  • minimise the need for transition between different services or providers
  • allow services to be built around the pathway and not the pathway around the services
  • establish clear links (including access and entry points) to other care pathways (including those for physical healthcare needs)
  • have designated staff who are responsible for the coordination of people's engagement with the pathway

Improving access to care There should be a single point of referral (including self-referral) to specialist services for adults with autism. Support access to services and increase the uptake of interventions by:

  • delivering assessment and interventions in a physical environment that is appropriate for people with hyper- and/or hypo-sensory sensitivities (see recommendation
  • changing the professional responsible for the person's care if a supportive and caring relationship cannot be established. Support access to services and increase the uptake of interventions by:

  • ensuring systems (for example, care coordination or case management) are in place to provide for the overall coordination and continuity of care for adults with autism
  • designating a professional to oversee the whole period of care (usually a member of the primary healthcare team for those not in the care of a specialist autism team or mental health or learning disability service)

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23 Aug 2021