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Jill Kirby

Jill Kirby: Bringing care closer to home would give families the ability to challenge bad care when they see it

Vulnerable adults with learning disabilities are still being dumped in badly-run institutions far away from their families, thanks to the system of NHS commissioning. This was the headline conclusion of the report released yesterday by South Gloucestershire council on the Winterbourne View Hospital scandal. The report reveals the comprehensive failure of all the authorities responsible for patients' welfare to act on numerous complaints about horrific ill-treatment and neglect taking place at the hospital. In our supposedly heavily-regulated health system, it is deeply shocking to find that such abuse is only taken seriously when it is shown on Panorama.

With depressing familiarity, the report cited the failure of “joined-up” care. The local health authority failed to note the frequency of Winterbourne residents' visits to Accident and Emergency, or to raise any questions about the home's reliance on heavy medication as well as its use of physical restraint. Avon and Somerset police were called 29 times, but admit that they failed to observe any pattern or draw any conclusions about the level of incidents at the home. In the space of three years the local Adult Safeguarding Board received 40 alerts about Winterbourne but seemed content to accept care workers' assurances that problems were being dealt with. Worst of all, the national Care Quality Commission decided not to follow up the notifications of abuse it received, because it assumed that the local Safeguarding Board was doing so. In other words, every authority coming into contact with these distressed, vulnerable and helpless patients seemed to think it was someone else's job to respond.

The report expresses concern at the apparently casual attitude of the local NHS Commissioning Board, who were content to pay Winterbourne View £3,500 per patient per week without troubling to find out whether staff or supervisors had any relevant qualifications. Nor did they pay any attention to the condition of patients before and after their admission. The Board seemed to feel they had fulfilled their obligations by allocating patient places and directing the funding. Indeed, the report suggests that the owners of Winterbourne View were well aware that this was the case, spotting a lucrative business opportunity.

Timed to coincide with yesterday's report, and giving a personal resonance to its findings, was the publication by Mencap of “Out of sight”, a dossier containing the case history of five adults with learning difficulties, all of whom were assigned to units like Winterbourne View and whose conditions deteriorated as a result. The conclusions drawn by Mencap are similar to those of the Gloucestershire report: large sums of money are being spent on inappropriate treatment in hospitals where adults with moderate to severe learning disabilities are sent, often contrary to family wishes. In theory, the placements are temporary, to enable changes in medication or assess treatment needs. In practice, they become permanent and the unsuitable nature of the treatment being given creates a self-reinforcing downward spiral of distress, frustration and violence.

Mencap makes a plea for policy changes, in particular the closure of these residential assessment centres, to be replaced by a localised system of care and support. One of the problems with Winterbourne View was that patients were being admitted from many miles away, with little opportunity for family visits; in some cases families were actually refused contact.

Not all adults with learning disability have families willing or able to keep an eye on them, but many do, and their wishes should be taken into account. The Winterbourne scandal will have made many parents of young disabled adults even more determined to go on caring for their grown-up children at home. They should not be discouraged from doing so, but they should be much better supported, through the provision of respite care and day centres. Moreover, unless there is clear evidence to the contrary, parents should be assumed to have their children's best interests at heart. Mencap's case studies show how parents trying to get the best for their children are discouraged or intimidated. Parents are too often sidelined when their vulnerable children reach the age of 18, yet they will almost always be the best advocates for those children, most able to interpret their needs or spot any deterioration in their condition.

Will Mencap's plea be answered? The Department of Health appears in principle to be on side; its own interim review on Winterbourne acknowledges that in future less in-patient care should be commissioned and families should be given more choice over local services. But it will take more than changing guidelines to make this shift; the rules on funding must also change, so that health authorities are forced to respond.

Commissioning and funding apart, this scandal also makes clear once again the appalling failure of regulatory authorities to act on findings of abuse. The Department of Health has called for more communication between agencies and a “multi-disciplinary” approach. But every time such scandals occur, be they child abuse, patient neglect or care home failings, the same call is made. The sad fact is that when the primary carers of the vulnerable or helpless abuse those in their care, regulatory systems too often seem to facilitate form-filling and buck-passing.

Families need to know that someone in the regulatory chain of command will take personal responsibility for the care of their loved ones, and that they will not have to rely on a TV exposé. Bringing care closer to home should also help to give families more confidence in the system, and the ability to challenge bad care when they see it. The government should promise to implement Mencap's recommendations as soon as possible.


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