Calls for national system change after autistic people and people with a learning disability ‘falling through the gaps’

The Care Quality Commission (CQC) has called for national system change after hearing that autistic people, people with a learning disability and people with a mental health condition were often subject to restrictive practices because they failed to get the right care early on.

The CQC report ‘Out of sight – who cares?’ includes recommendations designed to stop people from ‘falling through the gaps’.

The findings of the report revealed that people, particularly those diagnosed with autism, often ended up in hospital because of a lack of early intervention and diagnosis.

CQC inspectors and reviewers found that mental health hospitals were 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 report further revealed that a lack of specialised training and support for staff increased the risk of people being restrained, secluded or segregated.

It was found that long term segregation ranged from three days to 13 years, often a result of limited, suitable care in the community.

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.

Deborah Ivanova
Deborah Ivanova

“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 added: “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 has made a number of recommendations for the health and care system and its own role as regulator. These include: health, education, social care, justice and local governments pooling budgets locally and working together; having a named national specialist commissioner for complex care; and ensuring community teams are adequately trained in the skills to care for autistic people, people with a learning disability and/or mental health condition.

The full report and all of the CQC’s recommendations are available online.

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