The Care Quality Commission (CQC) is calling for an independent review 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. These reviews should examine the quality of care, the safeguards to protect the person and the plans for discharge, the regulator says.

"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."

CQC makes the recommendation in its interim report published today; in which it shares early findings from its review of restraint, prolonged seclusion and segregation for people with a mental health problem, a learning disability or autism.

The review, which was commissioned by the Secretary of State for Health and Social Care Matt Hancock, also highlights 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 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 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.

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.

Around half of the people in segregation were in wards managed by the independent sector and half were in the NHS. Twenty-four of the places were commissioned by a clinical commissioning group, 30 by NHS England specialised commissioning, three by local authority commissioning, two by Welsh commissioning and three did not specify the commissioning arrangements.

Response

“The 39 people we have visited who are cared for in segregation are in a very vulnerable situation," Dr Paul Lelliott, Deputy Chief Inspector of Hospitals (lead for mental health), at the Care Quality Commission, said.

"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."

"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."

"A better system of care would provide effective help early in life for people with complex problems and challenging behaviour. It must respond effectively when crises occur, so preventing the need to admit the person to hospital. If a spell in hospital is right for the person, this should be close to home and not prolonged because of lack of an alternative place for them to go. In short, the system must put the person at the centre and be engineered around their needs. This has implications for commissioning and for who controls the funding."

"We will also be reviewing and revising CQC’s approach to regulating and monitoring hospitals that use segregation to ensure we are gaining a true view of the quality of care for people subject to such restrictive practices."

The interim report focuses exclusively on the experience of those people cared for in segregation on a mental health ward for children and young people or on a ward for people with a learning disability or autism. It makes recommendations for the health and care system, including CQC. These recommendations are:

  1. 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 oron 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.
  2. 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.
  3. 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.
  4. 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.
  5. Informed by these interim findings, and the future work ofthe review, CQC should review and revise its approach to regulating and monitoring hospitals that use segregation.

As well as exploring the use of restraint in these hospitals, CQC will 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.

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

Government response

Health and Social Care Secretary Matt Hancock today announced that the government will fund specialist, independent advocates that he says will:

1) work with families
2) join up services
3) work to move people to the least restrictive care and then out into the community

There are currently 2,245 patients in mental health inpatient settings in England. The government has committed to halving this number by 2024. Since 2015, the number has reduced by 22%.

The plans have been announced ahead of a Panorama investigation into hospital abuse scheduled for Wednesday 22 May. The report was commissioned by the Health and Social Care Secretary last November.

The Health and Social Care Secretary says he will accept all of the CQC report’s recommendations and has shared a wider package of measures intended to improve care for autistic people and those with learning disabilities, including:

1) funding for specialist advocates to review the care of every patient in long-term seclusion or segregation
2) a new working group for learning disabilities and autism, bringing together experts, clinicians, parents and carers to develop a new model of care
3) a new awareness campaign, to encourage staff, families and friends to come forward if they have concerns about care
4) The commitments build on proposals announced earlier this year, which will see all health and care staff undertake mandatory training on learning disability and autism to ensure that the care offered is high quality, sensitive and compassionate.

Learning disabilities and autism are one of four clinical priorities in the NHS Long Term Plan. The plan sets out ways to improve community support and halve the number of people in mental health hospitals with a learning disability or on the autism spectrum by 2024.

"I have been deeply moved and appalled by the distressing stories of some autistic people and people with learning disabilities spending years detained in mental health units,"Health and Social Care Secretary Matt Hancock said today. 

"These vulnerable people are too often left alone, away from their families, friends and communities."

"At its best, the health and care system provides excellent support to people, backed by a dedicated workforce. But a small proportion of some of the most vulnerable in society are being failed by a broken system that doesn’t work for them."

"I commissioned the Care Quality Commission to review the use of segregation in health and care settings to tackle this issue head on. Today I have accepted their recommendations in full. I hope this is a turning point so everyone receives the care they need."

"I will not let these people down – they deserve better."

'Human rights scandal'

"We are shocked and appalled by today’s CQC findings, it’s a human rights scandal," said Sarah White, head of public policy at Sense, a disability charity

"Government must urgently safeguard people with a learning disability and/or autism, including children, ‘stuck in segregation’ in hospital settings. It is unacceptable that people with complex needs end up in restrictive hospital settings and are then unable to leave them because of a lack of appropriate community social care provision."

"The Health Secretary has already backed the CQC’s call for an independent review of these cases, which we welcome, and hope that the Government’s promise to address these systemic failures will be followed by immediate solutions. It’s time government finally started to prioritise social care reforms so that people with complex disabilities receive the right support across health and social care."

* A version of this article also appears on our sister site, Learning Disability Today.