CQC demands national system change to prevent future generations of autistic people and/or people with a learning disability from ‘falling through the gaps’

The Care Quality Commission (CQC) is calling for improved community-based capacity and capability across education, health and care for people with a learning disability, autistic people and or a mental health condition, after a review found undignified and inhumane care in some hospital settings providing complex care.

CQC was commissioned by the Secretary of State for Health and Social Care to review use of restraint, seclusion and segregation for autistic people, and people with a learning disability and/or mental health condition. The findings and recommendations are published today in CQC’s report ‘Out of sight – who cares?’

These include recommending that health, education, social care, justice and local government pool their budgets and work together to provide support for people with a learning disability, autistic people and people with a mental health condition as soon as they need it.

CQC heard from people in services that they were often subject to restrictive practices because they failed to get the right care early on. To avoid this in the future will require development of appropriate housing and specialist teams to provide the right services and support in the community to prevent admission to hospital.

Additionally, there must be a named national specialist commissioner for complex care with oversight for ensuring commissioners are held to account for their decisions. They would also ensure that the care of people with complex needs is reviewed every three months and their care is in line with human rights.

CQC inspectors and reviewers found that mental health hospitals are not always therapeutic environments and can be distressing, particularly for people with a learning disability and or autistic people. In some cases, they saw examples of people’s human rights being at risk, such as not being able to access fresh air and not having access to toilets.

The ward environment combined with a lack of specialised training and support for staff meant people were not always cared for in a way that met their needs. This can increase the risk of people being restrained, secluded or segregated. CQC found the length of time that people spent in long-term segregation ranged from three days to 13 years with a lack of suitable care in the community preventing discharge for 60% of people the CQC saw during its review.

Overall, people in community-based services were experiencing more person-centred care and a better quality of life than individuals with comparable complex needs in hospitals. The environments were generally more homely, and people had more access to the community. However, the quality of care people received varied, and was affected by the number and skills of staff available.

Restraint was used less in community-based services than in hospitals but there is currently no national oversight for people living in adult social care services who are subject to highly restrictive environments. As a result, CQC is recommending that a national reporting mechanism is developed for the use of restrictive interventions in children’s services and adult social care services to mirror that used in hospitals.

Debbie Ivanova, Deputy Chief Inspector of adult social care, said: “We have seen that it is possible to get complex care right, even for people who have previously been in hospital for a long time and require a lot of support. We found examples of person-centred care where staff were supporting people who require complex care to live fulfilling lives. Most examples of this were in community-based settings, where people were integrated into their local areas with a specialist staff team.

“Increased support in the community can prevent people who might otherwise be labelled ‘too complex’ from needing to go into hospital. However, a lack of specialist community support that meets the needs of people, has directly contributed to people being admitted to hospital and delayed their discharge. Our end goal is to see more autistic people, and people with a learning disability and/or mental health condition to be supported to live in their communities. The NHS Long Term Plan already has goals to increase community mental health provision, but this needs to happen as quickly as possible for people who need complex care.”

Dr Kevin Cleary, Deputy Chief Inspector of hospitals and lead for mental health, said: “During our review we saw people receiving poor care in unsuitable noisy and chaotic ward environments, undoubtedly causing them distress. We saw too many examples where people were subject to unnecessary restrictions and examples of people’s human rights at risk of being breached. Where we saw poor care or risks to people’s rights in our review we took action.

“People often ended up in hospital because they did not have the right support, early on, in the community at the time they and their families needed it. We found that once in hospital, people were often not receiving specialist treatment and care and there was often nothing in place to support them to leave hospital. There is no excuse for this.

“It is clear there needs to be fundamental change in the way care is planned, funded, delivered and monitored for people with a learning disability, autistic people and people with mental health conditions.Increased oversight and accountability are key to ensuring people are properly safeguarded. This must be underpinned by a firm foundation of human rights, to deliver a culture where restraint, seclusion and segregation are no longer accepted and are only used in extreme cases. We know this is difficult to get right but it is vital to prevent people who need complex care from being admitted to inappropriate hospital settings.”

CQC is making a number of recommendations for the health and care system, including its own role as the regulator. These include:

Recommendations for national system change

1. There must be a single point of ministerial ownership for the delivery of these recommendations. This will require the minister to work with delivery partners in health, education, social care, justice and local government to pool budgets locally and work together as soon as additional support needs are identified for autistic people, and people with a learning disability and/or mental health condition.
2. There must be a named national specialist commissioner for complex care.
3. Community teams across the country must have skills in caring for autistic people, and people with a learning disability and/or mental health condition to prevent them from having a crisis, and support them when they do, in line with and expanding on NHS Long Term Plan commitment 3.35. These may be new or building on existing teams skillsets.
4. There must be human rights embedded in the commissioning and delivery of care for children and adults with a learning disability, autistic people and people with a mental health condition. Individuals’ needs must be taken into account and reasonable adjustments made to meet these needs, thereby fulfilling the need to make adjustments that are reasonable in the context of the ward and other people.
5. There must be high-quality, specialist care for people who are in hospital for short periods, which must be focused on discharge, in line with and expanding on the NHS Long Term Plan commitment 3.36.
6. CQC must improve its regulatory approach for providers of services for autistic people, and people with a learning disability and/or mental health condition.
7. There must be enough staff with the right skills, competencies and experience to provide high-quality person-centred care for autistic people, and people with a learning disability and/or mental health condition.
8. Commissioners across health and social care should encourage and support the creation of smaller, bespoke services for autistic people, and people with a learning disability and/or mental health condition, in line with Building the Right Support and its supplementary guidance for commissioners.
9. Local authorities and clinical commissioning groups must report on the number of autism diagnostic assessments carried out in the community for children and adults and the number of people with a learning disability and/or autistic people who are admitted to hospital.
10. People, their families and advocates must be involved in the development of services and care plans. Services must support families to do this, especially where families are located far away from people’s placements. There must also be a way for them to escalate any concerns.

Recommendations on restrictive practices

1. There must be a contractual requirement on providers to inform commissioners and the NHS England regional team (depending on parliamentary approval of a regulatory requirement to inform CQC when segregation or seclusion begins in hospitals).
2. There must be enhanced monitoring by commissioners to ensure a plan for ending restrictions is in place and milestones for achieving it are met. There must be a named person in the provider with oversight for this to report to the commissioner. Where progress is not made, this should be escalated to NHS England.
3. There must be guidance developed to ensure independent reviews required by the Mental Health Act (MHA) Code of Practice are of a consistently high standard and are focused on reducing the restrictions.
4. Care Education and Treatment Reviews (CETRs) are made statutory so that the responsible organisations are held to account.
5. The Department of Health and Social Care must amend the Mental Health Act 1983 Code of Practice to change the definition of long-term segregation to include people who are segregated for reasons other than violence and to strengthen the guidance on how to safeguard people.
6. The National Institute for Health and Care Excellence (NICE) guideline on Violence and aggression: short-term management in mental health, health and community settings should be reviewed to ensure it is not used inappropriately for long periods.
7. A national reporting mechanism must be developed for the use of restrictive interventions in children’s services and adult social care services to mirror that used in hospitals.

Notes

• 20201020 RSS Thematic Review_FINAL FOR WEB.pdf 20201020 RSS Thematic Review_FINAL FOR WEB.pdf