Conversations About My GP Appointment

This Healthwatch Sandwell project explored the experiences of people with learning disabilities and autism when accessing GP appointments. The aim was to understand the barriers they face and to share feedback with healthcare providers to help improve access and ensure reasonable adjustments are made to meet individual needs. 

The project involved a series of focus groups and one-to-one discussions with people with learning disabilities and autism. Participants were encouraged to share their experiences of GP appointments, waiting rooms, communication with doctors and the appointment booking process. 

Participants described a range of difficulties when accessing primary care services. Several people reported feeling uncomfortable or overwhelmed in waiting rooms, citing issues such as noise, smells, lack of quiet spaces and anxiety in busy environments. One participant explained that they became distressed in the waiting room and left before seeing the doctor. 

Communication emerged as a significant concern. Some participants said they did not understand explanations about their health conditions or medications and were worried because they were not given information in a way they could understand. Others reported difficulties communicating with different doctors at each appointment and felt that healthcare professionals did not always understand their needs or communication style. 

Participants also felt that they were not always listened to or believed when discussing their symptoms and concerns. Some reported feeling dismissed and frustrated because they believed healthcare professionals doubted the seriousness of their illnesses. 

The report highlighted challenges created by changes to appointment systems during and after the Covid-19 pandemic. Some participants found telephone consultations difficult because they relied on visual cues, gestures or facial expressions to support communication. Others found masks intimidating because they made it harder to see facial expressions and lip movements.

A detailed case study described the experiences of a 22-year-old man with learning disabilities and autism who needed treatment for a recurring skin condition. He struggled to book an appointment independently because telephone booking conflicted with his working hours and online systems contained too much written information for him to process easily. His mother ultimately had to help him secure an appointment, which was scheduled four weeks later. 

The case study also highlighted difficulties with telephone appointments, including uncertainty about communication, delays in receiving a call and a lack of recognition of the need for reasonable adjustments during the booking process. The participant felt frustrated that he was unable to manage the process independently and believed that delays in obtaining an appointment contributed to his condition worsening. 

Overall, the report found that people with learning disabilities and autism can face significant barriers when accessing GP services, particularly around communication, appointment booking systems, sensory aspects of waiting rooms and a lack of personalised reasonable adjustments. Healthwatch concluded that more work was needed to understand these experiences and improve services. It proposed gathering further feedback from people with learning disabilities and autism and their carers, and developing an “experts by experience” review team to work with GP practices to assess and improve services.