Since the BBC Panorama programme in 2011, which exposed the abuse of people at Winterbourne View hospital, there has been increased scrutiny of how the health and social care needs of people with a learning disability are being met. The first response to this was the Department of Health report, Transforming care: A national response to Winterbourne View Hospital. This was accompanied by the Winterbourne View Concordat that many organisations, including CQC, signed up to. Through this, signatories committed to taking action to transform the provision of health and social care for autistic people and people with a learning disability who display behaviour that challenges, including those who have a mental health condition. This was particularly in reference to those who are cared for in specialist hospitals.
In 2014, the report Time for Change was published by the Transforming Care Commissioning and Steering Group. It recommended an expansion of community capacity and strengthened commissioning in order to reduce reliance on inappropriate inpatient care discharge.
In its 2015 consultation No voice unheard, no right ignored - a consultation for people with learning disabilities, autism and mental health conditions, theDepartment of Health acknowledged that "…some people are being admitted to hospitals or placed in residential settings which can be a long way from their family or from their home and which is often not their choice. This can make problems with behaviour worse, delay recovery, complicate discharge and it reduces contact with family and friends."
In October 2015, NHS England, the Association of Directors of Adult Social Services (ADASS), and the Local Government Association (LGA) published Building the right support. This is a national plan to develop community services and close inpatient facilities for people with a learning disability or autistic people who display behaviour that challenges, including those with a mental health condition. They also published an accompanying service model for commissioners of health and care services. This describes what good care and support should look like. The principles for commissioning good services, including quality of life, keeping people safe, and choice and control, are consistent with both the fundamental standards set out in regulations and CQC's ratings framework.
In December 2016, NHS England, ADASS and the LGA published a housing guidance document, Building the right home. This is guidance for NHS and local authority commissioners on how to expand the housing options available for autistic people and people with a learning disability who display behaviour that challenges, including those with a mental health condition.
The principles and ambitions of Building the right support are included within the NHS Long Term Plan 2019 which sets out commitments to reducing the number of people with a learning disability, autistic people or both in inpatient settings; to increasing the availability of specialist community support; and to improving the quality of inpatient care.
We support this work as a partner organisation of both the original Winterbourne View Concordat and the Transforming Care Delivery Board. It provides a clear picture of what good quality care models should look like. As NHS England and local commissioners develop community services and support to reduce reliance on inpatient provision, we will support this by making sure that applications from providers to register or change their registration are in line with this plan and the model, because they are aimed at delivering good quality care. We will also consider the extent to which applicants for registration and variations to their registration for services for autistic people and people with a learning disability have considered, and can demonstrate that they have applied, this model when determining whether to grant applications.
We have committed to taking a firmer approach to the registration and variations of registration for providers who support autistic people and people with a learning disability in A fresh start for registration and our report The state of health and adult social care in England 2014/15. In October 2016, we published The state of health and adult social care in England 2015/16 in which we identified concerns that providers were continuing to apply to register residential services that were not consistent with the new service model for people with a learning disability.
The Department of Health's 2012 report Transforming care states that:
"…the norm should always be that children, young people and adults live in their own homes with the support they need for independent living within a safe environment. Evidence shows that community-based housing enables greater independence, inclusion and choice, and that challenging behaviour lessens with the right support. People with challenging behaviour benefit from personalised care, not large congregate settings. Best practice is for children, young people and adults to live in small local community-based settings."
As Building the right support says:
"Over the last few years hundreds of people from hospital have been supported to leave hospital - but others are admitted in their place, often to inappropriate care settings, so the number of inpatients remains steady. We have not made enough progress when it comes to changing some of the fundamentals of care and support.
…Just like the rest of the population, people with a learning disability or autism must and will still be able to access inpatient hospital support if they need it. What we expect however is that the need for these services will reduce significantly. The limited number of beds still needed should be of higher quality and closer to people's homes."
We recognise that it is a challenging time to operate in health and social care, but we have a clear and informed understanding of what good practice looks like. We will not compromise on ensuring the best care for autistic people and people with a learning disability. We will make registration decisions and inspection judgements aimed at ensuring that models of care for people are developed and designed and provided in line with Building the right support and other current best practice guidance. We will support and encourage models of care that comply with national and best practice guidance, including those referenced in this guidance. In particular:
- We recognise that providers need to make decisions about how to invest their capital to expand their services, and that the likelihood of securing CQC registration is a key factor for providers.
- We do not routinely support the establishment of larger-scale services. Best practice guidance tells us that small-scale support best enables choice, community inclusion and independence. Where a provider wishes to establish a service that does not have a small-scale domestic feel, the onus is on them to demonstrate that they meet the fundamental standards and other relevant regulations. They must provide evidence that they can provide appropriate, person-centred care, which is inclusive, meets people's human rights and promotes choice and independence.
- We recognise the difficulties of discharging people from assessment and treatment units. This is because the current lack of suitable accommodation for autistic people, people with a learning disability, people with behaviour that challenges, or people with mental health conditions, can mean that new facilities, which do not comply with Building the right support, may still attract placements from commissioners. However, commissioners have signed up to implement the service model at a national level, and we believe that commissioners would prefer to commission services from developments in their own areas that comply with Building the right support, as opposed to commissioning services outside their areas that do not do so.
Since the publication of Registering the Right Support in 2017, the policy landscape has continued to evolve. We continue to review our guidance to take into account changes, with the aim of reducing inpatient care and supporting community-based options:
- The exposure of the violation of people's human rights at Whorlton Hall, where patients suffered horrific physical and psychological abuse has shone a light on closed cultures and the use of restrictive practices that must be eradicated. It reinforced how everyone involved in the care of people with a learning disability or autistic people has a part to play in identifying where abuse and human rights breaches may be taking place.
- In October 2019 we wrote to providers to highlight the steps we have taken to strengthen the way we assess these types of services. We asked that providers consider what steps they can take to better protect the human rights of people in their service. We produced supporting information to help our frontline staff to assess services where there may be a risk of abuse and abusive cultures.
- The independent review by Professor Glynis Murphy made a clear recommendation that CQC should not register or allow the expansion of services that are very isolated, in unsuitable buildings, with out-of-date models of care.
- The CQC review of the use of restraint, seclusion and segregation exposed a system of care that lets down some of the most vulnerable people in our society. The two-part review found many examples of undignified and inhumane care. It highlighted once more how a lack of appropriate community resources can lead to people needing to be admitted to hospital but can also prevent them from leaving.
- The Transforming Care agenda set a target of a 35%-50% reduction in inpatient care for people with a learning disability and autistic people by 2018/19. This has not been met, although the expectation remains for a 35% reduction to be achieved at the earliest opportunity. This has been complemented by new targets as set out in the NHS long term plan to reduce inpatient provision to half of 2015 levels by 2023-24.
- In February 2020 the Equality and Human Rights Commission sent a pre-action letter to the Secretary of State for Health and Social Care for failing to meet the original target and lack of confidence in the new target being met, and as such, a failure to protect people's human rights.
- The annual LeDeR report continues to highlight continuing health inequality for people with a learning disability and autistic people. The 2019 report showed that people from Black, Asian, and minority ethnic groups died disproportionately at younger ages than White British people. People with profound and multiple learning disabilities also disproportionately died at younger ages. The report also found that people with a learning disability died from an avoidable medical cause of death twice as frequently as people in the general population.