CQC urges reviews of cases where people with learning disability or autism are segregated in hospital

An independent review should be carried out of every person who is being held in segregation in mental health wards for children and young people and wards for people with a learning disability or autism, the Care Quality Commission has said.

The watchdog said in an interim report, Review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability and or autism, that these reviews should examine the quality of care, the safeguards to protect the person and the plans for discharge.

The CQC said its review, which was commissioned by the Secretary of State for Health and Social Care, also highlighted the need for a better system of care for people with a learning disability or autism who are, or are at risk of, being hospitalised and segregated.

From an information request sent to providers CQC was told of 62 people who were in segregation. This included 42 adults and 20 children and young people – "some as young as 11 years old". Sixteen people had been in segregation for a year or more - one person had spent almost a decade in segregation. The longest period spent in segregation by a child or young person was 2.4 years.

CQC said it had has so far visited and assessed the care of 39 people in segregation, most of whom had an autism diagnosis. “Reasons for prolonged time in segregation included delayed discharge from hospital due to there being no suitable package of care available in a non-hospital setting. For some, the commissioners had found it difficult to find a suitable placement.”

The watchdog added that the safety of other patients or staff and inability to tolerate living alongside others were the most common reasons providers gave for why people were in segregation. “In some cases, staff believed that the person’s quality of life was better in segregation than in the less predictable environment of the open ward.”

The interim report said that some of the wards were not suitable environments for people with autism and many staff lacked the necessary training and skills to work with people with autism who also have complex needs and challenging behaviour.

The recommendations in the interim report are:

• Over the next 12 months, there should be an independent and an in-depth review of the care provided to, and the discharge plan for, each person who is in segregation on a ward for children and young people or on a ward for people with a learning disability and/or autism. Those undertaking these reviews should have the necessary experience and might include people with lived experience and/or advocates.
• An expert group, that includes clinicians, people with lived experience and academics, should be convened to consider what would be the key features of a better system of care for this specific group of people ("that is those with a learning disability and/or autism whose behaviour is so challenging that they are, or are at risk of, being cared for in segregation"). This group should include experts from other countries that have a better and/or different approach to the care for people with complex problems and behaviours that challenge.
• Urgent consideration should be given to how the system of safeguards can be strengthened, including the role of advocates and commissioners, and what additional safeguards might be needed to better identify closed and punitive cultures of care, or hospitals in which such a culture might develop.
• All parties involved in providing, commissioning or assuring the quality of care of people in segregation, or people at risk of being segregated, should explicitly consider the implications for the person’s human rights. "This is likely to lead to both better care and better outcomes from care."
• Informed by these interim findings, and the future work of the review, the CQC should review and revise its approach to regulating and monitoring hospitals that use segregation.

The CQC said that, as well as exploring the use of restraint in these hospitals, it would expand its review to a wider group of settings in phase two (June to December 2019) including low secure and rehabilitation mental health wards and adult social care services. It will also work with Ofsted to consider the use of restrictive intervention in children’s residential services and secure children’s homes.

Dr Paul Lelliott, Deputy Chief Inspector of Hospitals (lead for mental health), at the Care Quality Commission, said: “The 39 people we have visited who are cared for in segregation are in a very vulnerable situation. Their world is narrowed to a highly restricted existence in a single room, or small suite of rooms. For many, their interactions with other people are characterised by distress and sometimes by the use of force by staff who consider this necessary to protect the person or others from harm. They have little or no say over decisions about their lives or their future. Many are also a long way from home - which can make it difficult for families to maintain contact.

“We are calling for urgent action to strengthen the safeguards that protect the safety, welfare and human rights of people held in segregation. We think that independent advocates have an important role to play in this – if they are trained and supported to recognise what is good care and what is not.”

Dr Lelliott added: “Given the severity and complexity of their problems, people held in segregation should be receiving expert care in an environment that is adapted to their specific needs. Although this was the case for some, for others the care was simply not of an acceptable standard. In some hospitals, a high proportion of staff were unqualified, with little or no training in the skills essential for working with people with a learning disability or autism and complex needs.

“Even if all staff provided the quality of care that we saw in the best hospitals we visited, people with learning disability or autism will continue to be admitted in a crisis, and so be at risk of becoming ‘stuck’ in segregation.

“The people we have visited have had contact with health, care and education services for many years, pointing to missed opportunities that may have prevented admission to hospital in a crisis because there was nowhere else for them to go; these people have been failed by the current ‘system of care’ and that system must be changed.”

The CQC will issue its full findings and recommendations in a final report in the Spring of 2020.

In response to the report, Julie Ogley, President of the Association of Directors of Adult Social Services, said: “ADASS welcomes the interim report of the Care Quality Commission and completely supports its recommendations. ADASS agrees with CQC’s conclusion that the ‘current system of care’ has failed people whose care pathway has ended with them being segregated in a hospital. The system is not fit for purpose.

“ADASS believes that the use of restraint, segregation and seclusion should be viewed through a Human Rights Act lens. It is fundamental we recognise that the use of such measures are all examples of deprivation of someone’s liberty – and so will be illegal, unless undertaken within the context of specific legislation designed to protect people in the most vulnerable circumstances– i.e. The Mental Health Act, Mental Capacity Act and in accordance with Deprivation of Liberty Safeguards (DoLS).”

Ogley added: “The use of restraint, segregation and seclusion of citizens should only take place as a last resort and for the shortest possible time, and only where the safety of the individual concerned is dependent on such action. Each incident should be subject to a best interest assessment and be subject to a full review of the circumstances which triggered the event.”

ADASS’ President said the association welcomed the recommendation for an independent and in-depth review of the care provided to and the discharge plan for each person who is segregated, and it was ready to play a part in the expert group.

She added: “ADASS believes that part of the answer to this problem is in investing in community-based services, including services which can respond at times of crisis, reducing the need for people with learning disabilities and autism to be admitted to special hospitals. Such services require funding and need to be available throughout the country, able to provide care and support for people with learning disabilities and autism to continue living as full citizens in the community.

“ADASS members in all local authority adult social care departments will continue to work with partners in the NHS to find appropriate care solutions, in close collaboration with people with learning disabilities and autism and their families. Restraint and segregation are unacceptable outcomes for vulnerable people and CQC is right to say that the system is not fit for purpose.”