Annual Health Checks for people with learning disabilities: carers' views

Healthwatch Sandwell undertook this project to understand the experiences of carers of people with learning disabilities when accessing GP services and annual health checks. The research included 31 survey responses, a focus group with five parents, and three individual interviews. 

The report highlights concerns about inequalities in access to healthcare for people with learning disabilities. While annual health checks are intended to identify unmet health needs and improve outcomes, many carers were unaware of the learning disability register or their right to receive an annual health check. Some carers only became aware of these services through support organisations or day centres rather than through their GP practice. 

Access to GP appointments was a significant issue. Most respondents reported difficulties obtaining face-to-face appointments, with only 32% saying they were offered them. Many carers felt that reception staff created barriers and described situations where they had to undergo telephone triage before a GP would decide whether a face-to-face appointment was necessary. Some carers also experienced difficulties because GP practices required adults with learning disabilities to make appointments independently, despite their support needs. 

Awareness and use of the learning disability register varied considerably. While 70% of respondents said the person they supported was on the register, 15% were unsure and 15% said they were not registered. Some carers only discovered the existence of the register through external services rather than direct communication from their GP practice. 

Experiences of annual health checks were inconsistent. Some carers reported receiving regular reminders, comprehensive reviews and good support from their GP practice. Others reported that surgery staff did not appear to understand what annual health checks for people with learning disabilities were, and some struggled to arrange appointments. Several carers described confusion around whether health discussions during routine consultations counted as annual health checks. 

The report found that carers often relied on external organisations and day centres to coordinate healthcare. In some cases, these organisations helped families access the learning disability register, develop health action plans and manage appointments. Carers valued this support and said it gave them confidence and reassurance.

Focus group participants reported very different experiences depending on their GP practice. Some described excellent support, proactive communication and assistance with wider issues such as equipment and benefits. Others experienced poor communication, lack of awareness among practice staff and difficulties obtaining appointments. Many participants felt there was a postcode lottery, with the quality of care depending largely on which GP practice an individual attended. 

A further concern was the support available for people with autism who do not have a learning disability. Parents argued that these individuals can still experience significant difficulties accessing healthcare services yet are not eligible for the learning disability register or annual health checks. Participants felt this created inequalities in healthcare access and support. 

The report concludes that while examples of good practice exist, there are substantial inconsistencies in how GP practices support people with learning disabilities and their carers. Healthwatch Sandwell found inequalities in access to appointments, registration processes and annual health checks, which can leave some families feeling unsupported. 

Healthwatch recommended gathering further information from GP practices to understand what support is currently available for people with learning disabilities and autism, and sharing the findings with relevant stakeholders to help improve consistency and equity across services.