Lack of progress in reforms for learning disability patients

In November 2014, a landmark report concerning the future of services for people with learning disabilities was released, following the exposure and subsequent investigation of abuse happening at Winterbourne View Care Home in Bristol 2011. The report was launched by Sir Stephen Bubb, Chief executive of the Association of Chief Executives of Voluntary Organisations (ACEVO) at the request of the NHS. His recommendations included:

· The closing of inappropriate in-patient care institutions.

· A Charter of Rights for people with learning disabilities and/or autism and their families.

· To give 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.

· Improved training and education for NHS, local government and provider staff.

· To start a social investment fund to build capacity in community-based services, to enable them to provide alternative support and empowering people with learning disabilities by giving them the rights they deserve in determining their care.

It had been hoped that this review would address many of the concerns raised about the sector following the BBC Panorama investigation of Winterbourne View, exploring how a new national framework of support may be delivered locally, in order to allow the growth of community provision required to move people out of inappropriate institutional care.

However, now more than six months on, there have been concerns about a lack of action and that there was an “absence of any tangible progress”. Sir Stephen Bubb said that although more people are being discharged from Winterbourne-style services than admitted, “it remains abundantly clear that a revolving door of discharges and admissions will continue unless a closure and transition programme is acted on”. Despite reforms having been made a top strategic priority by NHS England, “the pace of change remains slow, and this is unacceptable”. Citing a lack of communication between NHS England and third sector providers such as charities and community organisations to be responsible for the lack of transition, Sir Stephen flags this as a warning call ahead of a “formal stock take” of actions in six months’ time.

Taking into consideration the time it would take for appropriate placements to be found as well as care tailored for specific needs, it has been deemed that a change of pace needs to occur, especially for the many families of patients who feel that they have already waited too long.

In order for these reforms to happen community services need to improve. In a joint statement from Jan Tregelles, chief executive of Mencap, and Viv Cooper, chief executive of the Challenging Behaviour Foundation, more investment and the establishment of a highly skilled community workforce is needed in order to support children and adults with learning disabilities, as well as meet their individual needs.

Meanwhile, Jane Cummings, chief nursing officer for England and chairwoman of the Transforming Care Delivery Board who is leading the work had this to say: ” While a great deal of progress has been made we still have lots to do to transform and improve care for people with learning disabilities. We are committed to driving through changes at a fast but safe pace, we are on track to do so, and I will be setting out the closure and reprovision plans in October as previously announced.”

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