Restraint, seclusion and segregation and the Independent Care (Education) and Treatment Reviews

Page last updated: 12 May 2022

How the reviews took place

Between November 2019 and September 2020, 77 IC(E)TRs were completed. All but one of the people reviewed were detained under the MHA.

Of the people whose care and treatment was reviewed:

25 patients were in specialist learning disability or autism assessment and treatment units (ATUs)
16 patients were in medium secure units
13 patients were in rehabilitation units
10 patients were in high secure hospitals
nine patients were in low secure units
two patients were on mental health wards
one patient was on an eating disorder unit
one patient was in an acquired brain injury unit.

Nine of the patients counted above were in CAMHS facilities. More patients were in NHS facilities (48) than independent hospital settings (29).

In response to the pandemic, from March 2020 reviews were carried out remotely, to be followed up by an on-site review where required as soon as it was safe and sensible to do so. Thirty-four of the 77 IC(E)TRs were completed using the remote methodology, with 22 of these marked as requiring a follow-up on-site visit.

Each IC(E)TR was carried out by an expert panel made up of an independent chair; a service commissioner; clinical expert; expert by experience; and, under a special commissioning arrangement by the Secretary of State, an MHA Reviewer.

For each IC(E)TR, the expert panel spent a full day reviewing the care and treatment of a single patient. This included speaking to the patient and their family (where appropriate), interviewing their care team, commissioner and advocate, reviewing their environment (where an on-site visit took place) and scrutinising their care records. At the end of the review, the chair fed back the panel’s findings and recommendations to the care team.

Following each IC(E)TR, MHA Reviewers wrote a summary of the key findings and took part in a debrief session where any safeguarding issues or areas of concern were identified and escalated to local inspection teams. Concerns were escalated in 75% of all cases, with 58 individual cases across 29 locations being escalated to local inspection teams for review. Inspection teams responded immediately, taking a range of actions, such as addressing issues raised in ongoing engagement activity; carrying out focused inspections. In the case of one provider, inspectors included information from IC(E)TRs as evidence to issue a ‘notice of proposal’ leading to the closure of the service.

Lessons from the IC(E)TRs and thematic reviews

The findings from our thematic reviews and involvement in the IC(E)TR process paint a bleak picture of much of the care and treatment of people who were subject to long-term segregation. In the light of this, admission to hospital for autistic people and people with a learning disability needs to be very carefully considered, as it can have wide reaching and long-term consequences.

Admission to hospital

For some people, being admitted to hospital may be the right treatment decision, particularly where they also have a diagnosis of mental illness. Well-planned admissions with clear goals for discharge can support some patients to stabilise and move forward.

However, people being admitted to hospital from the community because their placement has broken down and not because they need to be in hospital is a widely accepted and ongoing concern.

Through the IC(E)TRs, we have found several cases where people have been admitted to hospital because there were no other credible alternatives in the community. For example, in one case we heard that a patient who had been stable and living in the community for 20 years, was admitted to hospital because the provider failed to follow the care plan for him. The patient was hypersensitive to noise, but a noisy person was accommodated next door to him. He was then taken to a theme park on a Saturday afternoon, which overstimulated and overwhelmed him, resulting in an incident. Following the incident, the provider served notice on him and he was admitted to hospital.

In situations like this one, there was little evidence that community care teams and commissioners had fully explored support options in the community. Often we found that care co-ordinators and commissioners had little or no history or experience of putting bespoke or creative interventions in place. In addition, we found that there is often no clear funding stream for providing bespoke community support, particularly where this support may be required over a longer-term period. There is also a lack of suitably skilled and equipped people to provide such support.

We found that poor commissioning decisions had led to some patients being admitted to hospitals that were a long way from home, often against the wishes of patients, families and carers and beyond the scrutiny of local teams. Admitting vulnerable people, often with limited verbal language or ability to make their distress understood, to unfamiliar and distant facilities increases the risk of a closed culture developing with all the inherent risks that this brings.

Over a third of the IC(E)TR patients we reviewed had been in hospital for between 10 and 30 years. At least half of the patients reviewed had been admitted to their current hospital placement not from the community, but from another hospital. In some cases, the reasons why people were transferred was clear and included, for example, to be moved nearer to home, stepping up or down levels of security, or because their previous hospital had closed. In other cases there was no clear rationale, but this could be due to issues with service provision, a breakdown in the therapeutic relationship, or because they had simply run out of ideas about what to do.

Families and carers of autistic people highlighted the impact that being transferred to a new hospital could have on their relatives. We heard that this could lead to an escalation in patients’ distress, especially where staff did not understand the patient or were unable to meet their needs. Care teams then used the evidence of increasingly disturbed behaviour as a justification for keeping the person in hospital. IC(E)TR panels found that few providers had recognised this or considered how distress could potentially be reduced by transferring people to their own homes.

Care and treatment in hospital

The IC(E)TR panels often found that care for autistic people and people with a learning disability in long-term segregation was poor. These findings repeat those of our thematic review and wider monitoring and inspection work. Some of the issues identified also engage people’s human rights.

We found that staff did not always have a good understanding of autism, even in specialist learning disability or autism units. A fundamental lack of essential assessments (such as communication, sensory, or cognitive function) meant that in some cases staff did not have even the most basic grasp of the needs of their patients. Many services reported a lack of specialist staff (such as occupational therapists, speech and language therapists and psychologists) to carry out assessments and develop autism informed care plans.

Most staff providing hands-on support were caring and compassionate and felt they were doing their very best with people with very complex needs. However, many staff told the IC(E)TR panels that they had only had a basic level of autism awareness training (often as part of their induction) and felt ill equipped to meet the needs of the patient.

Staff shortages were a common theme across many IC(E)TRs. This is supported by data from NHS Digital which shows that between March 2020 and September 2021, the percentage of registered nursing vacancies increased from 13% to 17%. This meant that some patients were being cared for by an ever-decreasing pool of familiar, experienced staff. Reliance on agency and bank staff frequently meant that ‘hands on’ staff were unfamiliar with the triggers for patients’ distress behaviour and not clear on how to de-escalate it. This invariably led to increased distressed behaviour by the patient and increased frustration, burnout and vacancies in the staff teams.

Poor quality positive behaviour support (PBS) plans made this problem worse. Some staff lacked confidence in what they were doing, and told the IC(E)TR panels about a trial and error approach to caring for individuals, rather than having a clear plan and listening to family input. Staff were sometimes frightened of patients due to levels of aggression and were not supportive of them receiving more interaction, exiting long-term segregation or working towards discharge.

Some staff demonstrated poor attitudes towards patients, including falling asleep while on observation duties; and abusive attitudes such as provoking or shouting at patients; or imposing punitive sanctions (for example, cancelling leave, removing personal possessions, or not allowing access to the telephone). Staff responsible for the day-to-day care of segregated patients told us that they were frequently excluded from decision-making meetings such as multidisciplinary team and care programme approach (CPA) meetings.

Individual sensory needs and communication issues frequently meant that the kindest way of caring for some people was in a smaller, quieter area of the ward. However, we saw huge variation in the types of environments patients were being segregated in. Some patients had their own bungalows, apartments, or an entire ward to themselves where attempts to make the environment comfortable and homely were clear. Others were segregated in a single room, which could be either their bedroom or a seclusion room.

We found many examples of patients being cared for in bare rooms, comprising of a mattress on the floor, devoid of any personal possessions or items of comfort. Overall a third of patients were living in environments that were of poor quality, did not meet their needs or were not compliant with the MHA Code of Practice. Some environments were dirty, and some did not have access to other rooms or areas of the ward, or outside space. The IC(E)TRs came across patients who had not had access to fresh air for many months.

In a majority of cases, staff sat outside the long-term segregation area observing the patient, sometimes via CCTV. Some CCTV cameras were trained on the toilet and shower area, with monitors located in areas that could be seen by other patients and staff. Staff had varying degrees of interaction (some very minimal) with the patient. For some, all activity and communication took place through a locked door, with food and other items (such as toilet paper) passed through a hatch. For one patient, this meant kneeling or lying on the floor as he was spoon fed through a hatch in the bottom half of the door.

Cultures of containing and managing risk had emerged so that patients led empty lives with little occupational therapy, activities, structure, or friendships. A third of patients did not have access to appropriate activities or therapies. There was a lack of focus on therapeutic intervention to help patients cope better, improve their communication skills or prepare them for discharge. Activities that were provided were rarely based on individual or personal interests. For example, one patient identified that they would like a punch bag, sensory box, paddling pool and bike, but the hospital said they were unable to provide any of these due to funding issues.

In just over a fifth of cases, we found that there was some dispute over patients’ diagnosis. It is not surprising that that multidisciplinary teams struggled to care effectively for patients when there was disagreement about diagnosis and approach. Invariably, this led to prolonged admissions, as specialist assessments and support were not sought where there was dispute. Similarly, commissioners reported that this made discharge planning very difficult because it was not clear which pathway or community provider would be the most appropriate for the patient.

Some patients we reviewed had been in these situations for many years. It is difficult to understand how managing people in this way could be considered therapeutic, and impossible to comprehend how patient’s behaviour might be expected to improve under such conditions.

Trauma and harm

A number of providers, Independent Mental Health Advocates (IMHAs), families and carers reported that patients’ distressed behaviour had got worse since being admitted to hospital. This included some patients who had become significantly more aggressive, begun to self-harm or whose self-harming had got substantially worse since they were admitted. In one case, a patient described as previously being on track to pass his GCSEs had lost all verbal language since being admitted to hospital and suffered such cognitive decline that he now struggles to understand the written word.

There was clear evidence that some patients required trauma-informed care not just because of the distress they had experienced before being admitted to hospital, but because of the trauma they had suffered in the hospital system. Services were poorly prepared for this and we struggled to find any examples of positive practice.

Where patients were identified as being inappropriately placed or where they were waiting for transfers to a different hospital (usually to one of a higher level of security), providers focused on maintaining the status quo. Some providers spoke candidly about containing patients until they could be moved on and openly agreed that they were no longer trying to improve patient’s quality of life or ease restrictions. Often, the provider had given notice to the commissioner in these cases.

During the IC(E)TR process we came across several patients who were detained on forensic sections following criminal proceedings. In some cases, this was for offences committed while in the community, but for a small number it was as a result of assaults carried out on staff or patients while an inpatient. There should be a wider debate about criminalising patients, particularly where it is a failure of services to adequately assess and meet their needs, which may be contributing to the levels of distressed behaviour and then result in an incident. Equally, the practice of prosecuting assaults that happen while a person is being restrained need to be reconsidered. We have found that discharging autistic people who are in long-term segregation is very difficult; for those with forensic backgrounds it is arguably even more so.

Attention to physical healthcare

The IC(E)TRs highlighted a lack of holistic care. Many patients in learning disability or autism specialist units had poor mental health care, while staff caring for autistic people in mental health units did not always fully understand their sensory or communication needs. Neither type of service was particularly adept at identifying, exploring and treating physical health concerns. The IC(E)TR panels found:

a frequent lack of understanding of how patients articulate pain
patients’ needs in relation to physical health services, such as dentists or opticians, were not always met
care teams did not always explore or work to reduce physical health conditions in otherwise young healthy people. For example, many patients were seriously overweight and had diabetes and hypertension. One 39-year-old patient had not had the reasons for her incontinence explored.
a lack of understanding of the impact of antipsychotic medicine on some patients’ mental and physical health. In some cases patients were being prescribed antipsychotic medicine without a clear rationale. This did not conform to guidelines around Stopping over medication of people with a learning disability, autism or both (STOMP) and Supporting Treatment and Appropriate Medication in Paediatrics (STAMP)
diagnostic overshadowing in terms of both physical and mental health issues.

Insufficient reviews of care, treatment and restrictive practices

Through the IC(E)TRs, we found that 35% of providers had failed to review long-term segregation in line with the MHA Code of Practice. As a result, in these cases patients were kept under very restrictive regimes for many years, even where providers recognised that patients were getting worse not better. In 30 of their reviews (39%), the IC(E)TRs concluded that patients were subject to overly restrictive care and treatment regimes. Fifteen patients (21%) were subject to prolonged, prone or mechanical restraints such as furniture and other objects being used to block exits, emergency response belts and handcuffs. Some patients’ lives were characterised by daily restraint and one patient was regularly restrained for 10 hours a day without a clear plan to reduce or review this.

Some patients had very limited or no contact with an advocate, while some advocates were not able to communicate effectively with patients. We found advocates endorsing practices which the IC(E)TR panel considered to potentially breach patients’ human rights

Very few patients understood their situation and how or when they might be discharged, although many were able to tell us they wanted to go home or leave the service. Others no longer sought discharge and had become so institutionalised that they were afraid to leave their long-term segregation area. One such patient refused to consent to any and all reviews of his care, which meant he had not had the benefit of an external care and treatment review.

Listening to patients and their families

Services were generally not very good at listening to patients and families. Patients were seen as “challenging”, “complex” and “lacking in communication skills”. Patients did not always feel that their wishes were taken into consideration when planning their care. Many patients told us they were unaware of what was being planned for their future.

When families tried to advocate for their relative, they were often seen as “overbearing” and “difficult”. As a result, some families felt frightened about criticising care in case there were repercussions for their relatives. A small number of families felt that they had had no choice but to go to the press, social media or their MP in order to get their concerns heard.

Patients were often not supported to keep in contact with families. For example, some families whose relatives had been placed far from home were given little or no support from the hospital, local authority or clinical commissioning group to visit their relative. In some cases, we heard that family relationships had broken down but hospital care teams provided little support to rebuild and improve these relationships. In addition, family members were often unable to have private phone conversations or visits with their loved ones. Providers told the IC(E)TRs that pandemic restrictions or other risk management concerns were the rationale for this, but this did not hold up to closer scrutiny.

Through IC(E)TRs we found that staff often did not have adequate skills to communicate with non-verbal patients or people who had complex communication support needs. Communication assessments were inadequate, and we found that most staff did not have training on Makaton or Picture Exchange Communication (PECS). In one case, the distressed behaviour of one individual had reduced once she was taught how to use PECS. We heard how being able to make her needs understood helped the individual feel less frustrated. As a result, she was self-harming less and was given more access to the garden, which she found calming and enjoyable. Unfortunately, she had been at the service for two years before staff with skills in PECS were available to support her to communicate in this way.

Patients were often being cared for by staff who were unfamiliar to them and, as a result, did not understand the nuances of their behaviour or communication. Some communication passports, which such staff would have to rely on for basic information on how to engage with patients, were of poor quality.

Discharge from hospital

We found significant problems with discharge planning. Almost half of the patients we reviewed did not have an exit strategy from long-term segregation or a robust discharge plan. Where discharge plans were in place, almost 20% involved a sideways move to another hospital, or to an empty ward because there were no other credible alternatives in the community. Some plans involved the transfer of patients to hospitals rated as inadequate by CQC. While families were alarmed by this, commissioners felt that these were appropriate plans.

For many of the patients reviewed, discharge into the community was the only way out of long-term segregation. However, this often appeared to be difficult to achieve as there were frequent disputes about the type of care needed, who would provide it and who would pay for it. This was made worse by the lack of suitable community placements.

We frequently heard that discharge planning did not start when the person was admitted to hospital, and for some patients was only considered after they had been in hospital for years. Once discharge was agreed, it took on average one to two years for a bespoke community placement to be arranged. In the meantime, patients remained in unsuitable hospital environments with poor quality lives, sometimes for years. For example, one patient had been recommended for discharge by a Mental Health Review Tribunal four years before the IC(E)TR review, without any action being taken. Another had been assessed as ready for discharge for a decade.

In a small number of cases, providers had served notice to commissioners stating that they could not care for the patient and that they needed to be urgently moved. However, again some of these patients had remained in the hospital for months or years after the provider had served notice. When commissioners failed to move the patient, or provide additional support and resources while alternatives were being sought, there did not appear to be a clear escalation process.

Keeping people in hospital often increased in their distressed behaviour, making discharge plans more complex or in some cases no longer viable. Discussions about discharge often seemed focus on how the patient was presenting in hospital, with ongoing distressed behaviour often used as the justification for continuing to keep them in hospital. When families attempted to remind commissioners and care teams of past successes of care in the community, they were seen as being unrealistic and minimising the problem at hand.

Care teams told the IC(E)TR panels that it was difficult to discharge patients to areas without specialist autism community teams. Even where such teams were in place, communication and planning for transition between hospitals and community services was often poor. Communication with families could be even worse, with families reporting that they were not always involved in discharge planning. In some cases, discharge plans that families disagreed with were being pushed forwards.

Discharge plans need to include additional support during the transition period and to anticipate that moving from the hospital to the community is unsettling. They must recognise that this may cause an escalation in distressed behaviour until the patient has a chance to settle. Unfortunately, we saw very few discharge plans with this contingency planning included in them. A small but significant number of patients reviewed in the IC(E)TRs were in hospital because previous discharges had failed very quickly due to poor discharge planning. In some cases, discharges had failed in a matter of days or weeks.

The IC(E)TRs identified particular problems in people transitioning from child and adolescent mental health services (CAMHS) to adult services. Moving from CAMHS to adult services can be a difficult time and risks disrupting any progress made. However, we saw little evidence of forward planning or a drive to discharge the patient before they turn 18.

In one case, a patient remained in a CAMHS service despite turning 21. Due to concerns about having an ‘adult’ on a children’s ward, the patient was only allowed onto the ward area after all the other patients had gone to bed, spending the rest of his time locked in the extra care area. Conversely, we heard of children having to remain in hospital until they became 18 because it was difficult to find placements in Ofsted regulated community services, and that there would be more choice once they had turned 18.

Safeguards failing patients

There is a system of reviews and scrutiny designed to protect vulnerable patients who are admitted to hospital. However, throughout the IC(E)TR process it has become clear that these mechanisms were failing patients and were not safeguarding them as they should.

The MHA Code of Practice

The MHA Code of Practice provides guidance on long-term segregation, which includes a system of regular reviews to ensure patients are cared for in the least restrictive way for the shortest time possible. However, we found that 16% of providers did not recognise the way they were caring for patients as long-term segregation, and there was some confusion about the difference between long-term segregation and seclusion. What constitutes seclusion and long-term segregation needs to be clarified, as failure to recognise this means that patients are not effectively safeguarded.

We also found that 35% of providers failed to review patient care in line with the MHA Code of Practice. Where they took place, the quality of the external reviews was generally poor and did not offer an in-depth independent scrutiny of the patient’s care.

Long-term segregation reviews did not attempt to gather information and views of a wider group of people, with IMHAs and commissioners rarely being involved. We found some reviews had been carried out without the external hospital reviewer (independent consultant psychiatrist) meeting the patient.

External reviews were often carried out by consultant psychiatrists who were not specialists in autism or learning disabilities, who worked in the same trust or independent provider, and successive reviews were completed by the same doctor. As a result, very few independent reviews challenged the treatment plan or made any recommendations about how to improve the patient’s situation. Where recommendations were made, we did not find evidence that they were followed and there is no follow-up or sanctions imposed where this is the case.

Care and treatment reviews (CTRs)

Care and treatment reviews arose as a safeguard under the Transforming Care Agenda and comprise of a panel including an independent clinical expert and an expert by experience, chaired by the commissioner or in secure settings, the commissioning case manager. CTRs provide a regular opportunity for commissioners to review the care and treatment patients receive while in hospital. However, the IC(E)TR programme uncovered evidence that CTRs were not consistently working as effectively as had been expected.

We saw some poor CTR reports with few recommendations in cases where the IC(E)TR panel had grave concerns about the quality of the patient’s care. We also saw many examples of providers ignoring recommendations from previous CTRs without any consequence. This included, for example, a recommendation made by a CTR in 2017 that a patient should be stepped down from secure care, for whom no progress had been made in this respect over the intervening three years.

The NHS England and NHS Improvement process for CTRs involves commissioners sending a report with their recommendations to the provider. They told us it is standard practice for this to go to someone who was present at the review, such as a nurse or ward manager. The same process was adopted for the IC(E)TRs, although CQC inspectors found that IC(E)TR reports were often not disseminated more widely than this. This became a problem when inspectors tried to discuss concerns found during the IC(E)TR with senior leadership teams who had no knowledge of the IC(E)TR report. Where multidisciplinary teams did not agree with the recommendations or were defensive about their practice, they were less likely to share CTR reports with senior leadership teams or act on their recommendations, undermining the intention and limiting the impact of the CTR safeguarding process.

However, a more fundamental concern is that many people are in services that cannot meet their needs, are a long way from home or are unable to be discharged due to a lack of community provision. The CTR is chaired by the same person who is responsible for both the inappropriate placement and the failure to commission suitable provision in the community. Under these circumstances, it is clear to see how this safeguard is failing people.

Both the CTR and IC(E)TR processes are dependent on consent, so if patients refuse to take part in a review, providing they have capacity to make such decisions, then they cannot go ahead. We came across a small number of patients who refused to consent to the process including one man who had refused all previous CTRs and as a result had never had his situation exposed to external scrutiny of this kind. This raises some questions about capacity as it is hard to credit that a person with capacity would refuse to participate in a review that would likely improve their quality of life. It suggests a failure to build capacity to make the decision. We found some patients had no ambition to move beyond hospital as they had been there that long it had become home (institutionalisation).

Autistic people find change very difficult and as a result some do not welcome a process that encourages change and discharge. However, we also had concerns about the consent process and concluded that there was a weakness in the system that relies on hospital staff (who may not fully understand the care and treatment review process) to seek the consent of the patient. In one particular case, both the patient and the staff believed that he was deserving of secure care and we questioned how rigorously staff would pursue consent for an external review under these circumstances.

Feedback from stakeholders heralded the IC(E)TR process as being far more robust and helpful in terms of supporting providers and commissioners to get it right. In her July 2021 report, Baroness Hollins recommended the continuation of independent case reviews for all people who are in segregation, including those who were in scope of the 2019 to 2020 reviews and all people who have entered segregation since November 2019 or enter segregation in future. We are pleased that the government is supporting the continuation of this independent review process, with the reviews restarting in November 2021.

Local authority safeguarding teams

During the IC(E)TR process, a number of concerns were escalated to the local authority safeguarding teams due to the seriousness of issues. Three safeguarding alerts had been initiated by others immediately before the IC(E)TR (families, providers and other stakeholders), six were made by the chair of the IC(E)TR panel and an additional four safeguarding alerts were made by CQC following discussion with the local inspection team. None of these resulted in the local authority safeguarding teams taking any action. Following their investigation, each safeguarding team concluded that despite concerns with the quality of care, providers were doing what they could in what were difficult circumstances for patients with complex support needs.

The IC(E)TR project team have met with the Chief Social Worker in relation to cases identified in IC(E)TRs where there was an apparent failure of safeguarding teams to take action where required. The Chief Social Worker’s Office had already been commissioned to write a Code of Practice in relation to safeguarding concerns under section 42 of the Care Act. Additionally, clear information about what does and does not constitute a safeguarding concern will be issued to ensure referring agents’ expectations are commensurate with the powers and duties of safeguarding teams.

Care Quality Commission

In line with the findings of the thematic review, we found that some of the most distressing cases were in services rated as good or outstanding. This highlights issues we have in our current methodology, that have been recognised in our closed culture programme and strategy development, and form the basis of challenges to CQC from the independent report for Norfolk’s Safeguarding Adults Board.

We are improving the way we register, monitor and inspect services for people with a learning disability and autistic people. This includes developing more in-depth inspections to scrutinise services’ cultures and understand people’s experiences.

Quality of evidence became a key issue throughout the IC(E)TR process. MHA Reviewers were able to present evidence of concern or harm based on what they had observed, the views of the expert IC(E)TR panel and on the accounts of patients and carers. Even with the expert backing of the panel, it could at times be difficult to argue that such evidence of poor cultures and risk of abuse was sufficiently robust to support regulatory action. It seems likely that, in the past, such evidence has not always directly impacted ratings or fed into enforcement action.

The reasons for this are complex, but includes the possibility that the weighting given to a patient’s or carer’s account is significantly less than that given to the provider’s account. This is known as epistemic injustice. Where MHA Reviewers’ evidence relied on the testimony of patients and carers, this was seen as less credible testimony than that of the provider. This was even the case when other stakeholder’s testimony corroborated the feedback of patients and carers. This provides a challenge to improve the way in which inspectors or inspection methodology understands and responds to concerns raised by MHA Reviewers. There is also a need for MHA Reviewer monitoring methodology to improve the way evidence is collated, to better supports concerns about patient care.

Our work in 2020/21

First-Tier Tribunal (Mental Health)