Report recommends ‘charter of rights’ for learning disabled

A report into the care of people with learning difficulties has called for the creation of a “charter of rights” to protect patients.

The document makes a series of recommendations, including giving patients and their families the power to challenge the system and request a personal care budget.

Sir Stephen Bubb, chief executive of the Association of Chief Executives of Voluntary Organisations, chaired an independent group which developed the action plan entitled Winterbourne View – Time for Change.

It was named after the private hospital near Bristol where undercover filming by the BBC’s Panorama programme showed serious abuse. Six workers were later jailed for ill-treatment and neglect.

The scandal in 2011 led to the Government pledging to move patients with learning difficulties into community care by June of this year, but the deadline was missed and there are still more people being admitted to such institutions than are being discharged.

Liz Kendall, Labour’s shadow care minister, condemned the missed deadline as a “total disgrace” and warned that the review “risks gathering dust alongside all the others”.

Sir Stephen said: “The Winterbourne View scandal shocked the nation. 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.”

Jane Cummings, Chief Nursing Officer for England, said: “We asked Sir Stephen to tell us how the NHS can better plan and fund care, treatment and support for people with learning disabilities and autism. He’s done that.

“This report asks every part of the system to respond. We are committed to playing a full and active role in the implementation of the recommendations and call on others to do the same.”

The report called for the planned closure of “inappropriate institutional in-patient facilities” and the creation of a social investment fund to increase the capacity of community-based services.

The recommendations also feature a requirement for local decision-makers to follow a framework that sets out who is responsible for which services and how they will be held to account.

Care and Support Minister Norman Lamb said: “The horrors of Winterbourne View exposed serious failures in the care of people with learning disabilities and autism and this report makes clear commissioning needs to change radically if services are to improve.

“It is unacceptable for people with learning disabilities and autism to be left in institutions if they can live in their own home or in the community. I am going to consult on changing the law to speed up delivery of the Winterbourne View commitments – to see people living in the community wherever possible and able to challenge decisions about their care.

“I welcome the thrust of Sir Stephen Bubb’s report.”

But Ms Kendall said: “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 (Assessment and Treatment Units) and moving people out of hospital and into the community.”

She added: “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.”

Carol Povey, director of the National Autistic Society (NAS) Centre for Autism, said: “This new report is the latest in a long line of inquiries into how to better ensure that the right services and support are in place for people with autism or a learning disability. Importantly, this latest report identifies the need to call for more investment in community support, backed by greater empowerment of the people affected.

“There is a shared, long-held commitment to what the report defines as ‘smaller more personalised services within a community setting where there is good access to local amenities and services’. The NAS believes that these services are essential if we are to avoid scandals like Winterbourne view or people with autism kept in hospital for too long and too far away from their homes and families.

“NHS England commissioned this report and they now need to act on its findings and put in place the robust commissioning framework and the financial backing to establish the community services people with autism need if they are to avoid unnecessary hospitalisation and live the lives they choose in the place they choose.”

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