Why Registering the Right Support is failing to deliver the aims of the Transforming Care Program
Panorama recently exposed the scandalous abuse of people living with a learning disability, autism and/or challenging behaviour and being treated at Whorlton Hall Hospital, County Durham. The footage recorded by an undercover reporter revealed a culture of abuse whereby staff were intimidating, taunting, antagonising and deliberately upsetting service users, using sexually explicit language and using restraint inappropriately. The hospital is now closed, sixteen members of staff have been suspended and ten have been arrested. The hospital, run by Cygnet Healthcare, was rated “Good” by the Care Quality Commission (“CQC”) at its last inspection. CQC has apologised for failing to uncover the abuse at its last visit in March 2018, despite receiving whistleblowing concerns.
Following Panorama’s uncovering of similar abuse of vulnerable people at Winterbourne View eight years ago, the government announced it would close down hospitals so that care could be provided closer to people’s homes. In 2012, a Concordat (or programme of action) was signed by many partner organisations, including CQC, whereby signatories committed to taking action to transform the provision of health and social care for people with learning disabilities or autism who have mental health conditions or behaviour that challenges. The Concordat sets out that “the NHS Commissioning Board’s objective is to ensure that Clinical Commissioning Groups work with local authorities to ensure that vulnerable people, particularly those with learning disabilities and autism, receive safe, appropriate, high-quality care. The presumption should always be that services are local and that people remain in their communities”. The signatories to the Concordat committed to “see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs and working together to commission the range of support which will enable them to lead fulfilling and safe lives in their communities.”
At that time, there were 3,400 people in specialist hospitals and two years on, little had changed. In 2014, Sir Stephen Bubb, author of “Winterbourne View – Time for Change” recommended action by the government to close hospitals, the introduction of a charter of rights to empower people and the appointment of an independent commissioner for people with learning disabilities. A raft of reports and policies followed under the umbrella of the “Transforming Care” programme, including NHS England’s “Building the Right Support” (and associated service model for commissioners), “Building the Right Home” and CQC’s “Registering the Right Support”.
The Department of Health’s 2012 report “Transforming Care” states: “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.” In “Registering the Right Support”, CQC states: “We are therefore seeking to work with Providers to develop services that follow best practice, in order to underpin principles of choice, promote independence and inclusion for all people with a learning disability and/or autism”. “Registering the Right Support” recognises the importance of choice, independence and inclusion, and confirms that CQC’s registration assessments will “ensure that the needs of people who use services are at the heart of our registration decisions”. However, we have seen an increasing number of applications being refused simply on the basis that they propose to accommodate more than six people or because they are situated close to another, separate, small service despite the provider being able to demonstrate that they are able to promote enablement, independence, choice and inclusion. In the 2018 case, Centurion Health Care Limited v CQC, CQC was reminded by the First Tier Tribunal that it must assess each application on its merits and that CQC “had fallen into the very trap that their own guidance warns against: We do not wish to be overly prescriptive, and it is not our intention to create a ‘one size fits all’ approach”. Despite the Tribunal’s decision, we still see applications being refused unfairly and people remaining in hospitals as a result.
In his report, Sir Stephen Bubb warned that building capacity in the community should be achieved by “a major expansion, and major improvement in quality, of community-based support services”. The report emphasises that Providers are “nervous of investing in expanding their offer in the absence of greater certainty that those services will be called on by commissioners and clinicians” and that the risk for Providers is significant. For example, Providers need to recruit and train staff, make adaptations to existing stock or invest in new buildings. This has to happen months in advance of a person moving in, sometimes years if, for example, a new development is going through planning. Because of this, discussions usually take place between Providers and commissioners long before an application to register a service is submitted to CQC. Providers can only invest in quality services if they know their services will meet local need and will be supported by commissioners.
Speaking on Panorama, Dr Paul Lelliot, Deputy Chief Inspector of Hospitals (lead for mental health) at CQC stated: “These hospitals should shut because they are no longer needed but that was said seven or eight years ago and it hasn’t happened. So it is delivering on that promise of providing alternative services, where these hospitals are no longer needed and people are discharged because there is somewhere better for them to go”.
Up and down the country, there are better places for people to go and Providers have been submitting applications to CQC to register new services for people with learning disabilities, autism and/or challenging behaviour which are closer to their homes and communities, have commissioner support and comply with the principles of the Transforming Care programme. These are places in which people want to live and which can enable them to live ordinary lives close to their communities with quality support from trained and experienced staff. However, as a result of CQC’s overly strict application of the six-bed rule and narrow interpretation of “campus” and “congregate settings”, people are still waiting in hospitals and receiving inappropriate care.
We have seen Providers going to great length to ensure their proposals comply with the requirements of “Registering the Right Support”, committing time and financial resources to properties which lie empty whilst the people who wish to be accommodated there remain in hospitals and inappropriate placements, far from home. At a time when CQC should be encouraging the registration of services from Providers who can demonstrate a track record of successful models of care for people with a learning disability, Providers are having to engage in long and costly legal proceedings to defend their applications. Meanwhile, CQC is expanding time and resources engaging in legal proceedings to prevent appropriate services being delivered in the community whilst abuse continues undetected in hospitals.