Improving Experiences for Patients with Autism in General Practice

This Healthwatch West Sussex report examined the experiences of patients with Autism Spectrum Disorder (ASD) and their carers when accessing GP services, following concerns raised by members of Autism Support Crawley. The project was undertaken in partnership with Autism Support Crawley and Pound Hill Medical Group, with 104 people completing a survey during summer 2016, most of whom were carers of someone with ASD. 

Overall, respondents were generally positive about the clinical care they received, with many reporting that they understood doctors' advice and found treatment from nurses accessible. However, significant concerns were raised about autistic patients' experiences in GP practices, particularly around appointments, waiting rooms, communication and staff understanding of autism. 

A major finding was that many respondents felt GPs did not understand autism adequately. More than half of respondents said they were not confident that their doctor understood the needs of someone with ASD, with only a small proportion expressing confidence in their GP's knowledge and awareness of autism. 

The report found that appointment booking was a significant source of frustration. More than half of respondents reported difficulties obtaining appointments, and many described the process as stressful, particularly when appointments were not available at suitable times or when autistic patients were unable to tolerate delays or sudden changes. 

Waiting rooms emerged as one of the most problematic aspects of the patient experience. Nearly a third of respondents reported difficulties using waiting areas because of sensory sensitivities, noise, crowds and uncertainty about waiting times. Families frequently described waiting rooms as stressful environments that increased anxiety for both autistic patients and carers. 

Many carers felt that they were not always listened to or taken seriously by surgery staff. Respondents reported having to repeatedly explain their circumstances, experiencing a lack of understanding from some reception staff, and feeling that their expertise as carers was not always valued during consultations. Nearly seven in ten respondents felt that their GP did little to support their own needs as carers. 

The survey asked patients about possible improvements and found overwhelming support for a range of autism-friendly measures. These included clear markers on medical records identifying patients with autism, autism-awareness training for all staff, longer appointments, autism identification cards, text-message systems allowing patients to wait outside until called, and stronger involvement between Autism Support Crawley and Patient Participation Groups.

Respondents made numerous practical suggestions to reduce anxiety before and during appointments. These included photo guides and videos explaining surgery visits, named GPs, home visits where appropriate, better communication about delays, quiet waiting areas, sensory equipment, accurate waiting-time information and improved understanding of sensory needs and communication differences. 

The report also highlighted concerns about broader care pathways, particularly communication and referrals involving Child and Adolescent Mental Health Services (CAMHS) and Child Development Centres. Healthwatch noted that these concerns would be explored separately in future work. 

Healthwatch, Autism Support Crawley and Pound Hill Medical Group agreed five key recommendations for creating a more autism-friendly GP service: introducing ongoing autism-awareness training for all staff, improving waiting-room experiences and information materials, using alerts and communication flags on patient records, providing better support for carers, and improving knowledge of referral pathways and support services.

As a result of the project, Pound Hill Medical Group developed an action plan that included autism-awareness training, enhanced patient records, "About Me" communication documents, improved identification of carers, awareness materials in waiting rooms and a system enabling patients to receive mobile-phone notifications when clinicians were ready to see them.