Learning Disability Today
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The fifth anniversary of the Panorama documentary that broke the Winterbourne View scandal was earlier this week. It served as a timely reminder that for people with learning disabilities stuck in assessment and treatment units, little has changed since then, says editor Dan Parton.
It was the screams that stuck with me. Screams of pain, of fear, of not understanding what was happening or why. The Panorama documentary on abuse at Winterbourne View was a shocking piece of television then – and still is; how those employed to care for and support people with learning disabilities could abuse them in such a way beggars belief.
After the scandal broke, there was an outcry from people with learning disabilities, those working in the sector and politicians, the latter issuing many well-meaning statements about how such abuse should never be allowed to happen again, and how things must, and would, change.
Since then, there has been a steady stream of investigations, reviews, reports, policies and such like, all designed to move people with learning disabilities inappropriately housed in assessment and treatment units (ATUs) and the like back into their communities. For instance, there has been the Winterbourne View Concordat, the Winterbourne View Joint Improvement Partnership, the Bubb Report and, most recently, Homes Not Hospitals.
But despite all the fine words contained in these policies, very little has changed on the ground since then. The Learning Disability Census 2015 summed this up: it revealed that there were still 3,000 patients receiving inpatient care – roughly the same number as in 2011. Remember, the government’s Winterbourne View Concordat had promised to move all those inappropriately housed in ATUs back into the community by June 2014.
While this is bad enough, some of the other statistics in the Census revealed a bleak picture of life for many living in ATUs. For instance, 72% had received antipsychotic medication, yet only 28.5% were recorded as having a psychotic disorder. In addition, 1,670 – more than half – had experienced one or more incidents of self-harm, accidents, physical assault, restraint or seclusion in the 3 months prior to the Census.
The name ‘assessment and treatment unit’ can seem a misnomer, as little of either happens in some of these institutions. The idea is that people go there for short periods to treat whatever problem they have, before they move back into the community. But all too often this doesn’t happen: the average length of stay in an institution is 4.9 years – another figure that refuses to go down. ATUs are in danger of becoming a modern version of the old long-stay institutions, which we thought we had got rid of in 2009.
Also, 670 people were placed in an institution 100 kilometres or more from home, an increase of 17% year-on-year. Is it a case of ‘out of sight, out of mind’ for commissioners? Is it just the easy option? Or symptomatic of a lack of provision?
It is difficult to say. What is clear is that this institutional model of care was wrong in 2011, and, as time goes on, it becomes more anachronistic. While there is a need for a small number of inpatient facilities for people with learning disabilities who are seriously unwell, it should only ever be as a temporary option: from day one there should be a plan in place for the person’s return to the community. People should not end up spending years on end in such places, as happens now – indeed figures from the Health and Social Care Information Centre revealed that 895 people have been resident in such a unit for 5 years or more.
Institutions such as these also go against the principles of personalisation, which has been the prevailing policy in learning disability services for some years now. But choice and control are something that people with learning disabilities living in ATUs certainly don’t have.
Of course, one of the main problems is often that the facilities and services in the community just aren’t there for people to move back into. The government’s austerity policies of the past 6 years have hit social care hard and many learning disabilities services have either been cut back or disappeared entirely.
Indeed, just last week a coalition of learning disability service providers, backed by former Care Services Minister Norman Lamb MP, said that care packages are already being withdrawn across the country by providers because they cannot continue to provide the care that their clients need at the prices paid by commissioners.
They also warned that care standards for people with learning disabilities will slip back if the government does not provide more funding for services, with the risk that the transformation agenda prompted by Winterbourne View will fail.
To bring the point home, on the anniversary of Panorama’s broadcast, 5 family members of people abused at Winterbourne View sent an open letter to Prime Minister David Cameron expressing their anger at the “painfully slow” rate of change towards improving care for people with a learning disability.
It is obvious that moving people with learning disabilities and behaviours that challenge out of ATUs and back into the community poses many problems for local authorities and providers. But why should this be the case? After all, we know what best practice looks like and have done for many years: you can go right back to Jim Mansell’s 1993 report, Services for people with learning disability and challenging behaviour or mental health needs – aka The Mansell Report – to find it.
This is one of the most frustrating things: we know how it should be done and that it can be done –there are numerous examples across the country of people with learning disabilities and behaviour that challenges who, with the right support package in place, live happy, fulfilling lives as an active part of their community.
Just as frustrating is the knowledge that these packages often cost significantly less than it does to keep a person locked in an ATU. In an era of austerity and counting every penny, it seems many commissioners are overlooking the cheaper, more effective option by just doing more of the same.
So, bluntly, we can look back on five years of failure from successive policies to address this issue. They haven’t worked, and, again, the reasons why are complex but well-known – funding, leadership, integrated working etc. It means that the imperative for change has only increased: there have been other tragedies in the intervening 5 years – such as Connor Sparrowhawk – and it is just a matter of time before another scandal such as Winterbourne View happens.
The status quo should not be allowed to continue. The current strategy, Homes not Hospitals, is just over 6 months old so we cannot judge it yet, but the warnings from the failures of the past 5 years should be heeded and, where the problems in delivering the change are found, effort from everyone involved – from the government downwards – should be made to overcome them, and sanctions be put in place for a failure to do so. It may not be easy – or quick – to achieve, but that doesn’t mean it shouldn’t be done, and there is no reason why it cannot be.
This is about people’s lives and that should never be forgotten; everyone should have the same chance to live the life they want to in their community. Too many lives have been – and continue to be – wasted in ATUs.