Overview
Aims of research:
- To understand the experiences of autistic people when contacting and visiting their GP practice.
- To understand the barriers that autistic people face when accessing their GP practice, and the impact of these barriers on them.
- To identify whether autistic people are aware of reasonable adjustments, and if this support is being offered and/or implemented by their GP practice.
- To understand whether autistic people feel understood by reception staff and/or healthcare professionals within their GP practice.
- To consider parent/carer perspectives on navigating GP services for the autistic person they care for.
- To explore any improvements GP practices could make to be more autism-friendly, from the perspective of autistic people.
Publication date
November 2023
Key findings
Most respondents found accessing GP Services to be very stressful, difficult and caused great distress and anxiety, meaning some avoided it altogether or did not benefit from their appointment. The barriers respondents commonly faced included:
- Not being able to contact the practice through a communication method suitable for them.
- Feeling dismissed or treated rudely by reception staff.
- Finding waiting areas incredibly difficult environments, which increased anxiety prior to an appointment.
- Experiencing significant anxiety from waiting itself, either on the phone or in-person, which often contributed to communication difficulties at the appointment.
- Not being supported with, or even being refused reasonable adjustments such as longer appointments, seeing a familiar clinician or a choice of appointment type.
- Experiencing a lack of kindness, patience and understanding from both clinical and non-clinical staff, meaning that respondents felt rushed, like a nuisance, or not safe to express their needs.
- A lack of awareness and knowledge of autism from clinical staff, such that respondents felt misunderstood and that the care they receive was not suitable or appropriate to their needs.
Some respondents did share examples of good experiences of GP Services, where particular members of staff had been especially kind and accommodating, which made a significant difference to their experience. Others said that they had received reasonable adjustments, and that these had a positive impact on how they were able to manage making and attending an appointment.
Additional information
Survey by Healthwatch Hertfordshire.
Healthwatch Hertfordshire and Healthwatch Essex have been commissioned by the Hertfordshire and West Essex Integrated Care Board (ICB) Primary Care Workstream to undertake a series of engagement projects.
The aims of the engagement projects include:
- Gathering lived experiences to feed directly into the Hertfordshire and West Essex ICS Primary Care Workstream.
- Supporting and enabling the Hertfordshire and West Essex ICS to achieve wider participant engagement.
- Engaging patients and the public on programmes covering key priorities and areas of importance at a regional and local level.
- Making recommendations to the Hertfordshire and West Essex ICS Primary Care Workstream so improvements can be implemented.