Stage 2 - Co-design of a Health Check
AIM
Building on Stage 1 and existing national and international resources the study:
- Create, test and validate an autism-specific health check.
- Co-design and develop a digital pre-appointment questionnaire for the autism health check, pilot use and revised.
- Design a training package for the autism-specific health check.
- Pilot the autism-specific health check in NHS primary care and completed final revisions.
METHODS
National survey
A national survey with autistic adults with physical health conditions, relatives/supporters and health professionals to explore autistic people's health needs, health service use, and views on health checks and adjustments to support engagement with healthcare.
441 autistic adults, 17 relatives/supporters and 50 health professionals from across the UK took part.
Findings
- 80% of autistic people thought a primary health check for autistic adults is needed
- Most people thought they should be for all autistic people including those with learning disabilities
- Most people thought they should start in childhood and be annual
- Most people thought they would be happy to provide information prior to the health check and also let their GP know about the reasonable adjustments they requested
- The top adjustments requested were:
- Environmental adaptions such as lighting, noise levels
- Health professional related such as knowledge of autism and seeing the right person
- Providing information about what will happen/what to expect
- Accessible appointments in terms of place and time
- Keeping to the appointment time
Our findings on the views about primary care health checks for autistic adults: UK survey findings are described here: Mason, D., Taylor, H., Ingham, B., Finch, T., Wilson, C., Scarlett, C., Urbanowicz, A., Nicolaidis, C., Lennox, N., Moss, S., Buckley, C., Cooper, SA., Osborne, M., Garland, D., Raymaker, D., Parr, J.R. (2022) Views about primary care health checks for autistic adults: UK survey findings
Co-design Focus Groups
Co-design the health checklist:
- A health checklist, for use by health professionals during the health check, has been developed in consultation with autistic adults, relatives and supporters and health professionals (through focus groups and interviews).
- In total 26 autistic adults (including 1 autistic adult with a learning disability), 10 adults with a learning disability, 7 relatives/supporters and 28 health professionals have been involved in the consultation to date.
Co-design and develop a digital pre-appointment questionnaire for the autism health check, pilot use and revise
- A pre-appointment questionnaire, that the autistic adult will complete before attending their health check, has been developed in consultation with autistic adults, relatives and supporters and health professionals (through focus groups and interviews).
- In total 26 autistic adults (including 1 autistic adult with a learning disability), 10 adults with a learning disability, 7 relatives/supporters and 28 health professionals have been involved in the consultation to date.
- This questionnaire includes information about their sensory and communication needs, any reasonable adjustments needed and their general health and wellbeing.
- This questionnaire will be available in paper form and digitally.
Design a training package for the autism-specific health check
- A training package for GP Practices who are assigned to deliver the Health Check for Autistic Adult in the trial has been created.
- This training package builds on existing materials to increase understanding of autism.
- Additional materials are being developed in relation to the health check itself, adjustments to healthcare services and about the trial procedures.
Findings
Our findings on the Co-design of an NHS primary care health check for autistic adults are described here:
