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 again. Some carers said they were labelled “difficult” or “disruptive” when they challenged the treatment their relative received.
Many described becoming reluctant advocates because they feared what might happen if they remained silent. Similar concerns about families struggling to obtain answers after serious incidents and deaths involving autistic people have been identified in previous research.
This led families to question how distress itself was being understood.
What professionals sometimes described as “challenging behaviour”, families recognised as fear, sensory overload, frustration, pain, confusion or an attempt to communicate an unmet need.
If distress is understood mainly as a risk that needs to be controlled, restrictive responses such as physical restraint become increasingly likely. Restraint means using physical force to limit someone’s movement and is generally intended as a last resort when there is an immediate risk of harm. Research has shown that the use of restrictive practices, including restraint and seclusion, can itself cause physical and psychological trauma.
Families described alternatives that could help. They valued communication passports, short personalised documents explaining how someone communicates and what staff need to know about their needs, alongside care plans setting out their fears, preferences and sensory needs. When staff used these well, carers felt signs of distress could be recognised earlier and some crises avoided altogether.
Families often knew the subtle signs that a relative was in pain or becoming overwhelmed, and what helped them feel safe.
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The problem described by families went beyond individual communication failures. They spoke about wider problems in how services were organised, how decisions were made, by whom and how concerns were handled.
Several described the trauma of seeking help for someone they loved and then believing that the care itself had caused harm. One participant expressed their anger by calling the system “the most corrupt, barbaric system going in the world”.
Carers also questioned what happened after things went wrong. Although healthcare policies emphasise openness and learning from mistakes, participants described accountability as “a hollow word”. Some struggled to obtain clear explanations and felt that complaints did not lead to meaningful change.
Their accounts echo concerns raised by the Care Quality Commission, the independent regulator of health and social care in England. Its Out of Sight review (published in 2020) documented longstanding concerns about restrictive practices and the treatment of autistic people and people with learning disabilities in hospital settings.
These concerns extend beyond the UK. The World Health Organization has highlighted efforts to move mental health services away from coercion, meaning practices that restrict a person’s freedom or compel treatment, towards approaches based on human rights, participation and relationships. The United Nations has also raised concerns about coercive practices and the rights of disabled people.
There is evidence that involving families may form part of the solution. A review of 53 studies examining ways to reduce restrictive practices found that family involvement was associated with lower use of restraint and other forms of coercion.
That finding reflects a central question raised by our research: whose knowledge is treated as valuable?
Family carers may hold thousands of small pieces of information about a person: how they show fear, what causes sensory distress, which routines provide reassurance and what apparently aggressive behaviour may be communicating.
Yet many participants described being pushed to the margins of decision-making or forced to fight to have that knowledge taken seriously. They believed this exclusion could increase the likelihood of distress escalating, deepen trauma and damage trust between families and services.
Efforts to reduce restraint increasingly recognise that coercion is shaped by relationships, institutional cultures and the way services are organised. Family knowledge may therefore be an important and underused resource for recognising distress before it becomes a crisis.
For the carers we spoke to, being listened to was ultimately about the safety and wellbeing of the person they loved.
If mental health services want to reduce the use of restraint, they need reliable ways of using the detailed knowledge families have accumulated over years of caring. That knowledge can help staff understand what a person is trying to communicate before distress reaches the point at which force is considered necessary.
