A mother discovered her son was restrained 33 times in six weeks. Another was told her distressed daughter is “aggressive” as six staff pin her to the floor and inject her with medication. Through tears, families describe images they cannot forget: bruises, broken bones, loved ones left sitting in urine-soaked clothes, isolated and afraid.

These are recent experiences shared by family carers supporting relatives with learning disabilities, autism and mental health conditions in mental health hospitals.

My colleagues and I spoke to 27 family carers about their experiences. Again and again, they described the fear that something might happen to the person they loved, alongside the frustration of knowing how to help but being unable to make that knowledge count.

Families told us that they had spent years learning how their relatives communicated fear, pain, distress and safety. They could often distinguish sensory overload from physical pain or anger. They recognised subtle signs that someone was becoming overwhelmed and knew which routines helped them feel secure and which situations could trigger panic.

This kind of knowledge is built through years of daily care and close attention. Yet many carers felt that their expertise lost its value as soon as their relative entered hospital.

Participants told us they were consulted during assessments but then excluded from decisions about care. Concerns raised after an incident were not always reflected in plans designed to prevent the same thing happening........

© The Conversation