Last reviewed 25 May 2015
Here’s a challenging quotation to start with: “It is not that we don’t know ‘what good looks like’. Nor is it that we don’t know what … we need to secure that good care … Instead, it is that we make it too hard for stakeholders across the system to make change happen, and too easy to continue with the status quo.” This comes from the Bubb Report into the Winterbourne View scandal published in November 2014.
“Winterbourne View”, you may well ask, “didn’t that happen several years ago?” It did indeed. The Department of Health’s response to the television exposure of the terrible treatment meted out to people with learning disabilities at that now infamous hospital/home came out in 2012. It was optimistically called Transforming Care, and a further DH review of the same issues published later the same year, carried the even more decisive sub-title A Programme of Action. So why were Sir Stephen Bubb and his distinguished advisory group still considering Winterbourne View in late 2014?
The answer to that question lies in essence with my opening quote; we know what should be done but we have not done it. To put a little more detail on the history, the Government had pledged in its 2012 statements that all of the people with learning disabilities inappropriately placed in Winterbourne-type institutions would be transferred into community-based facilities by June 2014. Not only was that pledge not achieved but, as the Sir Stephen gloomily reported several months after the deadline, “there are still more people being admitted to such institutions than are being discharged”.
The Foreword to the Report quotes the American physician and philanthropist, Samuel Grindley Howe, who wrote: “institutions are unnatural, undesirable and very liable to abuse. We should have as few of them as possible, and those few should be kept as small as possible.” That comes from a document dated 1851, so the history of inaction on abusive residential institutions goes back much longer than the years which have elapsed since Winterbourne Lodge. In this area where it is so easy to see what is wrong, why is it so difficult to achieve change?
I detect five elements to this problem — the treacherous tensions of politics, the ever-present scarcity of resources, a general resistance to change, the specific problems of collaboration, and the seductive draw of residential facilities. All are present in the lamentably slow follow-up to Winterbourne View and, lest one should suppose this problem to be unique to the field of learning disability, they can and frequently do inhibit the capacity to achieve progress in many other areas of social care. Redesigning services, in short, is very complicated.
Politicians, to address the first of those five factors, are often reluctant to acknowledge this complexity because it makes them look weak, even defeatist. Faced with a problem, whether it be a terrorist threat, an unexpected economic development, or a health care scandal, the first rule of politics is to promise decisive action.
Working out precisely how bold objectives are to be actually achieved, they seem to think, is an issue best left for tomorrow, when the heat of public outrage will have somewhat cooled. The opening words of the Bubb Report neatly illustrate this dynamic: “The Winterbourne View scandal, exposed by the Panorama programme, shocked the nation. It led to the Government pledge…”.
The same sequence of exposé, widespread concern and official promises has been seen on any number of occasions. Indeed development — or lack of development — in services for people with learning difficulties has been characterised by what some commentators have called policy making by scandal.
In defence of what might look like unprincipled politicians, it has to be conceded that they are frequently no more than following the even more capricious flows of public opinion, and those of us who have never stood for election should be wary of throwing the first stone. The, characteristically powerless, users of social care service only achieve substantial visibility on the rare occasions when they hit the headlines.
Counting the cost
Emphatic action having been rashly promised at one of those erratically recurring moments of general outrage, politicians very soon run up against the second factor which tends to delay action, counting the cost. Much has been written about social care’s resource famine and the situation has become worse than ever over recent years under the Government’s austerity programme. Clearly, the programme of post-Winterbourne action requires large-scale investment and this will have to be in competition with many other worthwhile projects.
Sir Stephen’s report called for what he calls a “life in the community social investment fund”, but this would require new money and the fact that the proposal was followed by the clearly desperate plea, “I urge government and NHS England to push ahead with funding” suggests that he had little hope that it would actually happen.
The response from the Minister for Care, that he “accepted the thrust of the report” — but not the detail? — seems to have kicked that expensive suggestion deep into the long grass. Finance should not of course be the catch-all excuse for failure to respond to the need for change, and innovation requires ingenuity as well as cash. But sometimes it has to be acknowledged there really is no alternative to extra money.
For some groups, care closer to the community can certainly be an economic option, at least over the long term, think modest domiciliary and carer support services for older people as against costly new institutions. Nevertheless, despite the outrageously high fees charged by the company running Winterbourne Lodge and unquestioningly paid by lazy commissioners, no one should expect the smaller more domestic-style homes which will replace inhumane “hospitals” to work out cheaper. Of course, politicians knew all this when they made their rash promises, so no excuses there.
Resistance to change
Innovation carries other non-financial costs too, and anything new runs up against what I characterised as a general resistance to change. For staff — not those actively involved in abuse, but normal decent staff going about their daily duties — patterns of behaviour can easily become entrenched and the prospect of change threatening. Some of these threats are real, not imagined.
Implementing new arrangements for the care of people with learning disabilities means that jobs will be lost or at least relocated, patterns of working will have to change — that’s for sure! — and there will need to be an attitudinal shift for just about everyone concerned.
Managers should of course be in the lead in making these adjustments, but for them too it is often easier to stay on a comfortably familiar path than to take the risk of experimenting with new directions. Community-based care for people with learning difficulties, as for other high dependency groups, is not easy to manage, and there have been disasters in these services too. Resistance to change may be widespread, contagious and malign, but the opposite — dismissing objections as irrelevant and rushing into untried alternatives — is equally fraught with danger. Watch out any time soon for a scandal occurring in a facility opened as a replacement for a Winterbourne-type institution.
Learning disability services are not unique in straddling health and social care, but their structures are particularly complicated. Achieving reform therefore requires close collaboration between systems which are separately funded and governed, and the difficulty presented by this sort of inter-agency co-operation is the fourth in my catalogue of change-resisting factors.
One might almost posit the principle that the likelihood of large-scale government projects being achieved — whether they are for urban renewal, integrated transport, or better health and welfare — varies in inverse proportion to the number of agencies involved. Part of that dynamic rests in the sheer difficulty of co-ordinating different financial, organisational and cultural operations. Funding for a person with learning disability does not follow them when they leave hospital, and the fact that local commissioners have to bear the cost of expanding community services inevitably acts as a disincentive.
At the launch of the Bubb Report, Jane Cummings, Chief Nursing Officer for England, appealed for “every part of the system to respond”, which was not just a tacit acknowledgment of an uphill task but rather an empty plea for organisations to act against their own interests. The report itself called for “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”, but again the tone is hopeful rather than assured. Will it happen? I doubt it.
The last of my five giants blocking change — the recurrent preference for large institutions over more modest community-based alternatives — has resonance across social and health care. It used to be said that local authorities liked building care homes because they could be named after councillors and other prominent political figures, a rather mean but telling way of encapsulating the seductive attraction of buildings. (The practice became less popular when a home called Nye Bevan Lodge was caught up in an abuse scandal which actively dishonoured the NHS’s founding father.)
From the days when workhouses replaced the so-called “outdoor relief”, the idea of grouping vulnerable people into centres rather than providing help in locations where they can retain their family and community contacts has exercised a sinister fascination. It may of course be the cheaper alternative, but it also offers the possibility of locating a distressing problem in places where it no longer uncomfortably impacts on our day-to-day consciences. Out of sight, out of mind, goes the saying, and it is regrettably apt in relation to the design of services for groups such as people with learning difficulty and autism, those with severe mental health problems, very old people with dementia, and so on.
The Bubb Report made a number of worthy recommendations. As well as those I have already mentioned, it called, for example, for a Charter of Rights for vulnerable people and their families, giving them opportunities to challenge decisions and to request a personal budget, and for improved training and education for NHS, local government and provider organisations’ staff. Its central proposal for “a planned closure programme of inappropriate institutional in-patient facilities supporting patient choice”, however, sounds horribly like no more than a restatement of the central problem it was set up to investigate.
Indeed, three months later, in February 2015, the National Audit Office published a report on exactly the same issue. Again, many of its conclusions sound distressingly familiar. “Moving people with learning disabilities and challenging behaviour out of hospital”, commented Amyas Morse, NAO’s head “is complex and defies short-term solutions. Unless all parts of the health and social care systems work effectively together, it is unlikely to happen.”
Noting that “NHS England has made a disappointingly slow start to this task”, he added, “there are formidable care, organisational and service hurdles to overcome”. Margaret Hodge MP, chair of the House of Commons Public Accounts Committee was more outspoken. “People with learning disabilities, admitted to hospital for assessment and treatment”, she said, “have been badly let down”.