'Urgent action' needed to protect adults with learning disabilities from poor care services

A Government commitment to remove adults with learning disabilities from inappropriate community care placements, made in the wake of 2011’s Winterbourne View scandal, has not only failed, according to an Acevo report published today, but the situation is now a lot worse.

The ‘Winterbourne View – Time for Change’ report, launched today, reveals that there are still more people with learning disabilities or autism being admitted to residential care than there are being discharged.

As review leader Sir Stephen Bubb explains: “Over the past few years people with learning disabilities and/or autism have heard much talk but seen too little action, and this forms the backdrop to our recommendations and our desire to see urgent action taken now to make a reality of the Winterbourne pledge. They deserve better and this Report provides recommendations on that essential roadmap for change.”

Key recommendations

Actions the review has called upon the Government to implement include the urgent closure of in-patient care institutions that are judged to be inappropriate, as well as giving the families of loved ones with learning disabilities the ‘right to challenge’ admittance decisions.

Sir Stephen writes: ‘Only by a big expansion of such community provision can we achieve a move from institution to community. So we need a mandatory national commissioning framework that delivers that expansion, pooled budgets, and a focus on the individual’s needs not the system boundaries. The role of the many voluntary and community organisations that both advocate for and provide services for people with learning disabilities and/or autism is crucial to that aim, as are the individuals themselves, their families, clinicians, managers and professionals across the health service and in local councils, who need to work together to achieve a dramatic turn-around.’

He continues: ‘In tacking this challenge it became clear to me that we need both a major expansion of community delivery driven by better commissioning but also, crucially, the empowerment of people with learning disabilities and/or autism and their families. That means a clear and robust Charter of Rights and an effective “Right to Challenge”, backed by strong advocacy and support, that enables citizens to demand change. We also propose that community-based providers have the right to propose alternatives to inpatient care from commissioners. And we support a major expansion of the right to request a personal budget; again we believe this underpins and empowerment of the individual citizen to have care and support appropriate to them.’

Winterbourne View

The case of Winterbourne View was exposed by a Panorama investigation, which led to a national outcry concerning the standards of residential care in the UK and the practice of admitting adults with learning disabilities to care homes rather than more versatile and community-based forms of supported living.

Although welcoming some of the review’s recommendations, executive director of practice development at Dimensions, Lisa Hopkins, is keen to see this core concern addressed.

She comments: “Whilst we welcome the proposal for investment in housing solutions, best practice enabling people to obtain real outcomes is achieved when people live in their local communities, supported in a personalised way that meet their needs in a home that they choose. Group living services, where people live with people they have not chosen to live with in an area that is unfamiliar to them, result in poor outcomes and unhappy people. People in such places are more likely to stay on inappropriate medication that decreases their quality of life, and the costly support actually diminishes their ability to be independent. We know from our experience of supporting over 3,500 people in 80 local authorities the vast health and quality of life improvements, not to mention cost savings, possible when treating people in a personalised way in their own communities.”

Ms Hopkins continues: “The Bubb report also accurately identifies that many ‘Responsible Clinicians’ employed by the major providers of Assessment and Treatment Units and Independent Hospitals can be risk averse, and disinclined to make recommendations for discharging people. What the report omitted to say is that many of these clinicians are also incentivised to keep people locked up in these units. We believe this represents a conflict of interest. We also welcome new work challenging such practice and the proposal to have a second opinion when someone is being held in such settings.”

Other responses

Jan Tregelles, chief executive at Mencap, and Viv Cooper, chief executive at the Challenging Behaviour Foundation, issued this joint statement:

“We welcome much of what is included in Sir Stephen Bubb’s report, but it must now lead to a clear plan and urgent action. Change to commissioning practices and development of local services is needed to support people to move out of Assessment and Treatment Units and back into the community. NHS England and the government need to explain how they will act on these recommendations, especially in the light of the Minister for Care’s recent announcement of a forthcoming government ‘Green Paper’.

“People with a learning disability and their families have been repeatedly let down by the failure to achieve the change we all want to see. The quarterly data that NHS England published earlier this month showed that for a fourth quarter more people with a learning disability are continuing to be admitted to inpatient care than are coming out. Although more people now have a discharge plan the data shows large numbers of people having to wait years to return to their local community, which is not acceptable.

“Following the scandal at Winterbourne View, which uncovered systematic abuse and neglect of people with a learning disability, there was a clear commitment from government, the NHS and local authorities to ensure that people with a learning disability get the right support and services in their local community.”

Leonard Cheshire Disability’s director of corporate affairs, Andy Cole, also comments:

“We owe it to the hundreds of thousands of people who have a learning disability in England to wipe out the cruel abuse we saw at Winterbourne View. We welcome this report which gives a clear steer to the NHS and local authorities to bring together public funds for health, housing and care. Every local councillor in the country should be thinking about whether their area is really providing the right kind of housing and care to allow people with learning disabilities to leave hospital and live full lives. We hope to see all local councils and health and care services step into action now to put the failings of the past behind us.”

The Acevo report was brought up by Labour leader Ed Miliband at today’s Prime Minister’s Questions, during which he called for a ‘firm timetable’ from the Government on these recommendations, but Prime Minister Cameron replied that ministers needed to have the time to consider the report in full before proceeding.