A Charter of Rights should be introduced to protect people with learning disabilities, while all Winterbourne View-style institutions should be closed, a report has said.
The report, ‘Winterbourne View – Time for Change’ was published by an independent group chaired by Sir Stephen Bubb, chief executive of charity leaders body ACEVO, with guidance and expertise from healthcare professionals, the voluntary sector, local government and people with learning disabilities, their families and carers.
Sir Stephen's report makes a series of recommendations for the NHS, local government, regulators and the government, including the introduction of a robust NHS commissioning framework to support people with learning disabilities and autism move out of hospitals and into the community.
However, the report has drawn criticism from those in the sector for lacking a clear action plan to close ATUs and put in place alternative provision.
The report sets out 10 recommendations including:
• The introduction of a Charter of Rights for people with learning disabilities and/or autism and their families
• Giving people with learning disabilities and their families a 'right to challenge' decisions and the right to request a personal budget
• A requirement for local decision-makers to follow a mandatory framework that sets out who is responsible, for which services and how they will be held to account, including improved data collection and publication
• A planned closure programme of inappropriate institutional in-patient facilities supporting patient choice
• Improved training and education for NHS, local government and provider staff
• The founding of a social investment fund to build capacity in community-based services.
“The Winterbourne View scandal shocked the nation,” said Sir Stephen. “People are still angry and frustrated that more people with learning disabilities are being placed in institutional care than moved into the community.
“We urge immediate action, to close all Winterbourne-style institutions and ramp up community provision. We need a new Charter of Rights to empower people with learning disabilities and their families, and give them the right to challenge the system. We need that system to have the courage to act on these recommendations, and not to promise another false dawn. The time for talk is over. It's time for people with learning disabilities or autism and their families to be put first."
Liz Kendall MP, Labour's Shadow Care Minister, said the failure to move people out of assessment and treatment units was “a total disgrace.”
She added: “People with learning disabilities and their families don't want yet another review, they want action.
“Ministers should now set a clear, two year deadline for shutting ATUs and moving people out of hospital and into the community.
“People with learning disabilities and their families should also be guaranteed the right to have a personal budget for their care, backed up with high quality advocacy and support. This would fundamentally shift power into their hands.
“And a specific individual in NHS England must be identified as responsible for delivering change.
“Without clear deadlines for action, more fundamental ways of empowering service users, and much stronger lines of accountability this review risks gathering dust alongside all the others."
No action plan
There has also been criticism from within the sector for the report. Rob Greig, chief executive of social change organisation NDTi and former government learning disabilities director, noted that the report “lacks any kind of action plan to make that happen.” He said:
“NDTi and others have repeatedly proposed practical ways to enable people with learning disabilities live safe, healthy lives as part of the community. We want the NHS, Department of Health and local government to stop commissioning reports and start taking action. As long as institutions like Winterbourne View are allowed to exist, we will continue to hear these appalling stories of people with learning disabilities suffering and even dying from neglect.”
Jan Tregelles, chief executive of Mencap, and Viv Cooper, chief executive of the Challenging Behaviour Foundation, agreed: “[The report] 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.
“Earlier this week, we heard the coroner’s judgement on the death of Stephanie Bincliffe, who tragically died in an Assessment and Treatment Unit in 2013. She was a young woman with her whole life in front of her and her family have been devastated by her loss. But they are not alone; other families have lost loved ones in in-patient settings. We also know these are places where people at are significant risk of abuse and neglect.
“It has been almost four years since Winterbourne View, and in that time there have been countless meetings, many reports and strategies, but little has improved and families are still fighting to get their loved ones back into the community. NHS England, working with their partners in government and local authorities, must now lead on enacting these recommendations as a matter of urgency. Anything less and they will have grossly failed the most vulnerable people in our society.”
Meanwhile not-for-profit service provider Dimensions has been more strident in its criticism of the Bubb report’s recommendations. Lisa Hopkins, executive director of practice development, said: “Whilst we welcome the proposal for investment in housing solutions, best practice enabling people to attain real outcomes is achieved when people live in their local communities, supported in a personalised way that meets 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.
“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.
“At this stage it is also unclear how the report will be acted upon. The Department of Health, local authorities, CCGs, and the NHS have not yet formally backed the proposals. The proof will be in the pudding – in this case, in Care Minister Norman Lamb’s forthcoming green paper.
“In the wake of the Winterbourne revelations, and the recent tragic death of Stephanie Bincliffe in one of these units, now is the time for all parties to come together – people we support and their families, providers, clinicians, influencing organisations, self-advocacy groups and commissioners – to identify personal, local pathways that put an end to these injustices once and for all.”