Content originally from Care Quality Commission
We looked in depth at how long-term segregation was used. We found that the 66 people we met in who were in segregation had been let down by the health and care system. Creating a package of care to meet their individual needs was often seen as too difficult to get right and they had fallen through the gaps.
Not getting the care and support in the community when people needed it started at a young age. This ranged from families not having the right support to help them care for their children at home when they first felt extra help was needed, to not having specialist support in a crisis. For example, some of the people in our review had waited too long, sometimes years, to get a diagnosis of autism. Even when people were diagnosed as autistic, families told us that they did not get the care and support they needed from health, social care and education agencies.
This lack of support in the community often led to people becoming increasingly distressed and, in some cases, suicidal or violent. When people reached this ‘crisis point’, hospital was often the only option left.
Below is the story of Alexis, an academic, international athlete and school teacher. Alexis was restrained many times before she was able to leave the hospital system.
I suffered a personal crisis when my brother died and I was unable to access appropriate care in my local area. With my ability to manage my autistic reaction to trauma deteriorating, I sought help from mental health services. This proved to be my biggest mistake.
I entered hospital for an initial 72 hours’ intervention. Due to a catastrophic clash between my autism and the environment, I became overloaded and entered a damaging cycle.
It felt cruel – like I was set up to fail. I would never, ever be able to tolerate the lighting, the noise, the chaos and the sensory charged box I was kept in. My different and sensitive autistic neurology was at the mercy of those who held the keys. I began to look as they described, violent and dangerous because I couldn’t control myself.
In total I was restrained 97 times and secluded 17 times. I was forcibly drugged. The drugs took over every aspect of my very being. My body was battered and bruised, and my identity was fractured. They didn’t like the autistic part of me. I tried to tell them that autism is all of me, it’s who I am. I argued that my autism couldn’t be treated. They said I lacked insight. Knowing I couldn’t change, and being labelled as “treatment resistant”, I grew to hate myself and I lost hope. I’d never get out.
After three and half years of restrictive practice in 12 different hospitals around the UK, I fled whilst on a Section 3 to Africa. There, I created a routine. I made my days predictable and my home autism friendly. Nothing in my house aggravated my sensory system. I weaned myself off the drugs, sought private psychology for the trauma I experienced (starting with the death of my brother). After six weeks, I started work as a teacher again. The key to success is creating the right environment and treating psychological differences with dignity and respect.
We found the environment of mental health hospitals was often not therapeutic
We did not visit all hospitals, but for the 43 hospital wards we visited, we found the majority were not therapeutic environments. For people at crisis point, hospital should be a temporary solution that helps people to get well enough to leave quickly.
People, particularly those with a learning disability and/or autistic people, need to be cared for in person-centred way that meets their individual needs. They should be discharged as quickly as possible back home or to more suitable accommodation in the community where they live.
However, we found that some people were admitted without proper assessment and did not have an assessment of their needs while in hospital. As a result, many of the people we met did not have a clear care and treatment plan in place. Often where people did have care plans they were of poor quality, with no treatment plan to support them to leave hospital.
Where we found assessments were carried out and care plans were in place, the quality of these varied. Many of the plans we saw did not take account of individual needs. A common theme was that people felt they were seen as a collective of behaviours to be ‘managed’, rather than understanding the underlying causes of their distress.
Poor leadership and poor cultures were also a barrier to people receiving person-centred care. At some of the hospitals we visited, we found that staff did not feel listened to or supported to look after the people in their care. Staff told us that they did not always have the necessary training and skills to understand people’s needs. People that care for people with a learning disability need to be able to properly understand them. They often lacked training on communication skills such as Picture Symbols and Makaton. Not being able to help people to communicate could cause people further distress and lead to an increase in restrictive practices.
Overall, hospital wards were not therapeutic environments. The noisy and chaotic nature of the wards could add to people’s distress, particularly for autistic people. Often, they communicated this distress in ways that others found challenging. This behaviour was then used to as a rationale for using restraint, seclusion and segregation.
While it was acknowledged that hospital services were not the best place for people with a mental health condition, people with a learning disability and/or autistic people, there were often difficulties in finding people suitable care in the community. Complex commissioning arrangements and poor communication between providers and commissioners could lead to delays in identifying suitable community care or getting the care package ready.
In some cases, we found that community care packages had fallen through due to issues with funding or providers feeling unable to meet the needs of the individual. These delays and failed placements could lead to a deterioration in people’s behaviour. As a result, people could find themselves being moved into more secure and restrictive environments, like medium or high secure units, and could lead to them becoming ‘stuck in the system’.
We found inappropriate use of restrictive practices, for example the use of blanket restrictions
The use of restrictive practice is not inevitable. We saw examples where, with the right care package and plans in place, staff could help people when they became distressed and de-escalate the situation to avoid using these techniques.
However, nearly all of the services (hospitals and adult social care services) that we visited used some form of restrictive practice. Where we found evidence of people being restrained, secluded or segregated, we were often told that this was for their own safety or the safety of others.
Restraint was often used to manage people who were distressed and behaving in a way that others found challenging. Across the services we looked at a number of different restraint techniques were used. These included:
- Physical restraint – where people were physically held because they were acting in way that was a danger to themselves or others
- Chemical restraint – where prescribed medicines were used to calm an individual
- Rapid tranquilisation – where people are injected with medication to calm them down
- Mechanical restraint – where a device, such as a safe suit or harness is used to control a person’s behaviour.
The use of restraint varied across the services we visited. In some of the hospitals we found that it was rarely used, but in others it was a daily occurrence. In adult social care services, restraint was used more than seclusion or segregation. This is concerning, as currently there is no national oversight on the use of restraint and restrictive practices such as seclusion and long-term segregation.
Seclusion was another option used to manage difficult situations safely. It is only meant to be used for the shortest time possible, but we found evidence that despite people being calm and settled, seclusion was not ended as it should have been. In some cases, people were living under these conditions for a long time. In some care homes and supported living services we found that staff did not always recognise when patients were being secluded.
The environment and conditions of many of the seclusion rooms in hospitals that we saw were unacceptable and did not help people to get better. For example, few seclusion rooms had access to natural light or fresh air, and only some had access to bathrooms or toilets. Most rooms were bare, without personal belongings or access to a TV or music. In addition, people in seclusion were not allowed to take personal possessions in with them (even items that gave them comfort). While this was often for the safety of the individual, in some cases we found that it was due to blanket restrictions being place.
Living in such an environment, particularly for a prolonged period of time, could affect people in many ways. For example, we saw evidence of how it could affect people’s sleep patterns and could lead to their physical and mental health getting worse.
For people who posed an ongoing risk to themselves or others, we were told it was considered necessary to keep them separate from others on a long-term basis.
Some of the people we met who were in long-term segregation were living in good quality environments. In these cases, people had access to several private rooms, including a bedroom, separate lounge, kitchen and bathroom. People were also able to personalise where they were living and create a homely feel.
However, for many people in long-term segregation the physical environments did not meet people’s needs or help them to get better. For example, we found that people had little or no access to outside space, were living in unclean accommodation and did not have access to basic things like toilet paper or cutlery. Similarly to people in seclusion, we found that some people did not have access to personal belongings because of blanket restrictions being in place.
People who are living in long-term segregation should have care plans that aim to reintegrate them on to the main ward as a step towards moving into the community. But we found that this was not in place for some of the people we met. Many hospitals told us that they struggled to reintegrate people as the unsuitable ward environment meant that it was not in the person’s best interests.
Impact of restrictive practices
We saw how frightening it could be for people to be restrained, which could lead to them resisting and injuring staff. However, providers did not always recognise how distressing the use of restraint and other restrictive practices could be for people. They also did not recognise the long-term impact of being in restrained, secluded or segregated.
People told us that the more they were restricted in hospital, the harder they found it to recover. However, we found that few staff were trained in trauma-informed care. As a result, people were given few opportunities to talk about the nature of their distress, and were not supported to move forward.
However, it is possible with the most complex needs to lead a good quality of life
While none of the services that we visited were providing perfect care, we did see some examples of good practice, most of these were in the community. For example, in some hospitals we found evidence of people being cared for in innovative ways with smaller units and higher staff ratios.
But overall we found that people got better care in the community than in hospital. Services generally had a good understanding of people’s needs and tailored their care and environment accordingly to meet the needs of the individuals. Staff that we met, who were well trained, knew and understood the behaviour of the people they were working with. This meant that they could help to prevent or de-escalate situations that were causing people distress.
We also saw some great examples of care planning at the secure children’s homes we visited. For example, we saw a range of screening assessments completed on admission, including screening for autism.
For each of the children placed in a secure children’s home, there was a clear aim for the time they were at the home. This was agreed at an initial planning meeting and then reviewed at each review meeting. The goals of being in the home were clear, and the service could be measured against how they were achieving the outcomes.
Summary of recommendations
Taking the learning from the good practice we have seen, we want to see tangible progress on four key areas. Our full recommendations are detailed in our report.
- People with a learning disability and or autistic people who may also have a mental health condition should be supported to live in their communities. This means prompt diagnosis, local support services and effective crisis intervention.
- People who are being cared for in hospital in the meantime must receive high-quality, person-centred, specialised care in small units. This means the right staff who are trained to support their needs supporting them along a journey to leave hospital.
- There must be renewed attempts to reduce restrictive practice by all health and social care providers, commissioners and others. We have seen too many examples of inappropriate restrictions that could have been avoided. We know in absolute emergencies this may be necessary, but we want to be clear – it should not be seen as a way to care for someone.
- There must be increased oversight and accountability for people with a learning disability, and or autistic people who may also have a mental health problem. There must be a single point of accountability to oversee progress in this policy area.
Last updated:27 October 2020