The words Winterbourne View are etched into the public’s consciousness. They have come to symbolise everything that is wrong with care for people with learning disabilities, autism and complex mental health needs.
Now a new independent report, commissioned by the head of NHS England, suggests there has been an “absence of any tangible progress” since a previous review into the scandal. This despite a series of public commitments to transform care by moving people into community services that are better tailored to meeting their health and support needs.
Winterbourne View was a privately run assessment and treatment unit (ATU) that provided therapeutic interventions for people with complex needs and was directly commissioned by the NHS. In 2011, BBC Panorama exposed the appalling care and treatment of people there, showing them being bullied, bruised and assaulted. This came as a surprise to many who believed that these kinds of services no longer existed and that people had been transferred to community services after a closure programme of long-stay hospitals.
ATUs are today’s equivalent of what social psychologist Erving Goffman called “total institutions” – they routinely hold people many miles from their own homes and local communities and are run by both NHS and private providers. Of the 92 organisations involved, around half are directly run by the NHS.
Since Winterbourne View the clarion call across the sector could not be clearer: ATUs risk harbouring cultures and ways of working that are far removed from the ethics, values and cultures of modern, high-quality services focused on bespoke and personalised care. As Simon Stevens, head of the NHS, recently said: services need to be provided in a radically different way. This means that as ATUs are de-commissioned there needs to be a step up in community provision. Community services allow disabled people to live the kind of “ordinary life” that others usually take for granted. They are well placed to ensure support extends beyond simply meeting their personal needs, and more truly reflects their personal preferences, aspirations and choices.
The ongoing campaign for justice for Connor Sparrowhawk demonstrates how problems with ATUs were not just confined to Winterbourne View. In 2013 Sparrowhawk, 18, was admitted to Slade House ATU, run by Southern Health NHS Foundation Trust. Four months following his admission he drowned in the bath, a death that a report from the trust concluded was entirely preventable. While there is an ongoing campaign for accountability and changes in the law, as well as in the commissioning and regulation of these services, the sad fact is that this is just one of numerous campaigns.
What we know now
When news first broke about Winterbourne, no one knew how many people were placed in ATUs. It took time to create a learning disabilities census – Panorama aired in May 2011 but a census was only established in September 2014. The latest census shows there are 3,230 people living in ATUs (a figure markedly similar to the 3,250 in the previous census).
So what has been done since the Winterbourne scandal? Recent reports have made much noise but empty progress. In its latest report this month, NHS England and partners began by saying: “We have made progress, but much more needs to be done”. These are, sadly, well-rehearsed lines that have come to characterise a protracted policy response.
It seeks to disguise deeply entrenched ways of commissioning complex care and a lack of action. And since the Care Quality Commission’s oversight of health and social care commissioning was scrapped, the regulator has no power over this situation.
A first report by Stephen Bubb, chief executive of the Association of Chief Executives of Voluntary Organisations, (commissioned by Stevens) into ATUs last year described in strong terms the need to urgently close them.
His new report, Winterbourne View: Time is Running Out, describes a continuing lack of progress in closing ATUs and reluctance on the part of policy makers and commissioners to fully engage with community providers. The report recommends moving beyond the “walls of the state” to enable a positive shift of care to happen by providing bespoke, personalised care for people with learning disabilities.
Voluntary sector organisations have a strong track record of long-term investment and innovation in the disability sector by virtue of the the “social license” provided through their charitable aims. Bubb, in particular, is a keen advocate for third-sector providers to take a strong and active role in supporting the ATU closure programme.
We also know that the costs of community services are far cheaper than long-stay institutions. But community services cannot be built up overnight. The right housing needs to be purchased, or even built. The workforce needs to be recruited, trained and developed to ensure services are fit for purpose and sustainable in the long term.
In a report from the Voluntary Organisations Disability Group (VODG), we featured a story that showed that it is possible to do things more radically. Chris (23) left an ATU with high levels of support, which were gradually reduced from round-the-clock care provided by three members of staff and multiple daily physical interventions, down to two staff and eventually one during the day. These outcomes, achieved by supporting Chris in the community, saved commissioners around £130,000 a year. Good-quality community care such as this can help to make ATUs redundant.
There is now a requirement for those commissioning care to put the needs of people using services at the centre of the process and to enable them to make decisions about their own care, to trust and support those providers with a strong track record to move people out of ATUs and into community services – at scale and pace.
Commissioners must also make difficult decisions to close institutions, recognising the uncertainly of the impact it will have on those ATUs run both by the independent sector and the NHS, but in the knowledge that the right thing is being done for the right reasons. They will also need to take the long view and enable savings to be unlocked through collaborative partnerships between people using services, providers and local commissioners.
What went on at Winterbourne View was a national disgrace. So too has been the lack of progressive change since the problem was first exposed. Just as long-stay hospitals closed, we now need to be mindful that in closing ATUs we do not replace these institutions with other, equally oppressive, forms of care.
Day in, day out there are inspiring services providing excellent care. In doing so, providers win the opportunity to put their values into action and commissioners spend less money doing the right thing for the right reasons. These community services enrich the lives and well-being of many of the 191,000 people living with learning disabilities in the UK.
Rhidian Hughes is Chief Executive of the Voluntary Organisations Disability Group which represents not-for-profit disability and care services
Authors: The Conversation