Care Services: Abuse of Learning Disabled
(12 years ago)
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Lord Rix
My Lords, first, I should apologise for my limited appearances in your Lordship’s House of late but my wife has been in hospital for some time and returns for major heart surgery at the beginning of January. I am sure your Lordships will understand where my priorities lie after some 63 years of marriage.
I am equally certain that all of us present today will have read the government report about Winterbourne View Hospital, Transforming Care, and will have welcomed the sentiments expressed by the Minister of State in his introduction to the report and in his Oral Statement. The report sets out a strong commitment to prevent abuse happening again and stresses in no uncertain terms that clinical commissioning groups and local authorities must develop services so that people can remain in their communities and not be sent away, where they are at greater risk of abuse. As is the way of things, what is written on paper and what happens in practice is often very different. I urge the Government to remember that the policy on local and personalised support has been in place for years—it is the implementation that has failed. I can only hope that this short debate will underline our agreement with many of the Government’s proposals and reinforce their determination to carry them through, in partnership with others.
The serious abuse suffered by people with a learning disability at Winterbourne View Hospital has rightly shocked the nation. The images broadcast in the BBC’s “Panorama” programme in 2011 and again in October this year have left us angered and bewildered. They have also left many of us astonished that such brutal treatment of extremely vulnerable people did not bring down the full force of the law on the management and board of directors of Castlebeck Care Ltd—the owners of that so-called hospital. Unhappily in this country, under successive Governments, people at the top of organisations who fail in their duties of oversight and accountability seem to escape scot-free, while those lower down the ladder are held to account for their role in scandals. I look forward to seeing proposals in the spring on what the Government intend to do to strengthen the accountability of managers and directors in both public and private providers.
To underline this whole sorry saga, let me tell your Lordships about Simon, whose experiences were written about in Mencap and the Challenging Behaviour Foundation's Out of Sight campaign report. Simon has a learning disability and behaviour that challenges. He spent 15 long months at Winterbourne View, far from his family and the community that he grew up in. During that time he was hit, pushed, abused and tormented. Prior to Winterbourne, Simon had received support locally and lived close to his family. When Simon needed a few more hours of care and support, social services refused. Things got worse for Simon and he was sent to an assessment unit. From there he was sectioned under the Mental Health Act and then sent far away to Winterbourne View. His parents describe the torment of being helpless to prevent this, sidelined by uncaring authorities which did not listen to them or to Simon. With the Care Quality Commission failing to see the signs of poor practice, it took a whistleblower and “Panorama” to expose what was happening. Simon’s story and that of his family brings into sharp focus our failing as a society to care for and support those who are most vulnerable.
Winterbourne View Hospital was a 24-bed institution run by Castlebeck Care Ltd. It was registered as a treatment, assessment and rehabilitation centre for people with learning disabilities. What it became was a place where people remained for significant periods of time, sometimes years, well beyond the time they should have been there for the supposed purposes of assessment and treatment. In that time they were subjected to emotional, verbal and physical abuse.
There are over 1,500 people with a learning disability in assessment and treatment centres, and 3,400 in total in in-patient services. This is far too many. It should rarely be necessary to admit a person to an assessment and treatment unit. In most cases what the person needs is good assessment and support in the place where they are living. However, people are ending up in places such as Winterbourne View because either support services in their local areas are not available or the skills and expertise to support people locally is lacking.
The late and much missed Professor Jim Mansell called these places “dumping grounds” used by commissioners looking for an easy so-called solution for placing some of our most vulnerable people with high support needs. And we should not forget cost. Each person at Winterbourne attracted funding of around £3,500 a week—money that would have been better spent on local support services that are in all likelihood cheaper.
What of the scale of the problem? We might be tempted to think that Winterbourne is an isolated incident, but this is not the case. Following the “Panorama” programme, the Care Quality Commission carried out unannounced inspections of all similar units and a number of social care residential services across the country. Its report in June of this year showed that half of the services investigated were not only failing to meet essential standards around care and welfare but also failing to meet standards around protecting people from abuse. This was a deeply concerning finding, meaning that essential safeguards were seriously lacking in many institutions, placing vulnerable people at risk.
Of course, it comes as no surprise to organisations such as Mencap—of which I must declare an interest as president—and the Challenging Behaviour Foundation. We have been campaigning tirelessly on this issue and our joint report Out of Sight must remain firmly on the Minister’s desk in coming years to remind him of the task ahead.
The action plan in the government report commits to a timetable to review all current placements and, by June 2014, to move all those inappropriately placed to community-based provision. While clear timescales are to be welcomed, the future of vulnerable people in remote institutions seems now to hang on the words “inappropriately placed”. Who will determine this? Will the person with a learning disability and their family have a say? I fear very much that the tendency of professionals, commissioners and public authorities to protect the status quo will win over. We must be bolder. These units must close and no more should be permitted to open by the Care Quality Commission.
I turn now to the Care Quality Commission. The regulator, when inspecting Winterbourne View, failed to spot the abuse that was taking place. Furthermore, its inaction when contacted by a whistleblower was totally unacceptable. However, it has since reacted quickly and purposefully to the scandal, carrying out a comprehensive programme of unannounced inspections. We may not see it often, but the CQC does have teeth. For example, it can refuse to register public and private providers who wish to develop new services that go against national policy and put people at high risk of abuse. The CQC can also deregister high-risk existing services. I want to see the Care Quality Commission using its powers to stop another institution like Winterbourne View ever being established.
Your Lordships may recall that back in the 1980s all the talk, and subsequent action, was about care in the community and the closure of long-stay subnormality hospitals—yet here we are, some 30 years later, still finding that care in the community does not exist for many of those in need of care. Instead, they are transported sometimes hundreds of miles away from their homes and left to rot in what is, in effect, a small, long-stay subnormality hospital. How can central and local government allow this non-care in the community to happen—and at such cost to the taxpayer, too?
What happened to Simon? He is now back living near his family, and loving life again. He is at the residential care home he was in before he was sent away, but the service has been adapted to meet his needs. This has been done by developing a flat for him adjoining the care home, where he lives with his support team. Simon’s package of care costs half as much as it did at Winterbourne View and I know from Mencap, which is working with his mother, that he feels safe and happy. A solution has been found.
Living safely and happily should be the reality for all those with a learning disability and behaviour that challenges, and we must strive to make it a reality. Then, and only then, will the promise of care in the community be fulfilled.
Lord Touhig
My Lords, I thank the noble Lord, Lord Rix, for securing this debate and for bringing to it his very great experience and background in giving support and care to people with disabilities.
In his Statement on the final report on Winterbourne View, the Minister for Care and Support, Mr Norman Lamb, said that,
“hospitals are not where people should live”.
He was so right. He went on:
“There are far too many people with learning disabilities or autism in hospital, and they are staying there for too long—sometimes for years … We should no more tolerate people being placed in inappropriate care settings than we would people receiving the wrong cancer treatment”.—[Official Report, Commons, 10/12/12; col. 49.]
However, the truth is that we have been prepared to tolerate this sort of care—and for far too long. We have simply tinkered at the edges of the issue of caring for people with learning disabilities.
As the noble Lord, Lord Rix, said, more than 30 years ago the big idea was care in the community. Everyone got worked up calling for the closure of institutionalised hospitals and care homes. At the county hospital near where I then lived in Pontypool was a ward called St Hilda’s Ward. The hospital had been the local Victorian workhouse and this ward was given over to the care of around a dozen ladies with learning difficulties. It had become their home and they had become very much part of the community, shopping in local shops and attending every event from carol services to school fêtes. Care in the community was supposed to end this sort of caring arrangement, giving people an independent life in their local community, but I believe for many it has made things worse. In order to give people a degree of independence, they were put into small houses and encouraged to live in what were supposed to be family units, but for many the care was non-existent.
A dear friend of mine was persuaded that her daughter with Down’s syndrome would be better off living independently in the community. She was placed in a house with two elderly men, both of whom had dementia. The so-called care amounted to a person—often a different person—calling each morning to see that they had breakfast, coming again in the middle of the day to see that they had a midday meal, and calling late in the afternoon to see that they had tea or supper. The rest of the time they were left alone, with next to no contact with neighbours or anyone but close family. My friend’s family rightly removed this lovely young person from this so-called care in the community placement. It simply did not work and care in the community did not amount to a tin of beans.
Contrast that with three young women, all with Down’s syndrome, whom I met during the Blaenau Gwent by-election. They lived together in a small house and their carer lived with them. It was truly a family environment. They had a rich and varied social life, and the carer was part of their family. That is real care in the community, but I believe it to be the exception rather than the rule. If any noble Lords walk down Victoria Street tonight, barely a few hundred yards from this Chamber they will see people sleeping in doorways. Many clearly have mental health problems and learning difficulties, but their homes are cardboard boxes. This is the life of many who should be cared for in the community.
The Minister, Mr Lamb, said that all hospital placements will be reviewed by June 2013 and everyone who is there inappropriately will move to community-based support as quickly as possible. Could the Minister say precisely what is meant by a move to community-based support? If it is like the so-called care in the community that we have now, I wonder how many will end up like the poor souls sleeping on Victoria Street.
I would now like to spend a few minutes speaking about another matter of concern—disability hate crime. More than a third of the patients at Winterbourne View had a diagnosis of autism and the National Autistic Society, of which I, along with the noble Baroness, Lady Browning, have the honour of being a vice-president, has been campaigning to end poor care and abuse at large, institutional-style services such as Winterbourne View since “Panorama” first aired its programme. The 11 individuals who were charged following the Winterbourne View scandal were charged with disability hate crimes. Disability hate crime is a major concern, regardless of whether someone is in hospital, a care home or the community. It is clear that nobody should suffer abuse because of their disability. In race-related hate crime, the Attorney-General has the power to intervene to increase sentencing where he believes that it has been too lenient. I strongly believe that this power should be extended where there has been a disability-related hate crime.
A lack of training and support for staff can contribute to poor and, in the most extreme cases, abusive practices such as those seen at Winterbourne View. It is vital, therefore, that staff have access to training in the specific needs of patients, especially those with autism. The Department of Health made specific commitments related to training in the adult autism strategy. However, I know that the National Autistic Society is concerned that such commitments have not been fulfilled. In July, the National Audit Office published a memorandum explaining that, despite progress in many areas, key recommendations related to training had not been implemented. Its report demonstrates that the Government have failed to, for example, work with the National Health Service and local authorities to identify priority groups for training and to ensure that autism awareness training is available to everyone working in health or social care.
I urge the Government—and I am sure I am not alone in this—to ensure that the training commitments made in the adult autism strategy are fulfilled. The review of the strategy will take place next year. This is the chance for the Government to carry out their promise to ensure adequate training. I certainly hope that they will embrace that.
Baroness Jolly
My Lords, I start by echoing the words of the noble Lord, Lord Touhig, in thanking the noble Lord, Lord Rix, for bringing this important issue to the attention of the House. His personal expertise and wisdom have informed the House for many years, and long may it continue.
It is vital that we make public this failure in care and act swiftly to ensure that vulnerable populations in society are treated with dignity and afforded quality, compassionate treatment. Today, I want to touch on a few distinct aspects of this issue. Systemic and, perhaps, societal issues need to be raised. As evidenced by the 11 individuals prosecuted and sentenced for providing shockingly abusive care, the actions taken by these staff at Winterbourne View were criminal. There is no excuse for this appalling abuse. I am pleased to note that the criminals have been brought to justice and that larger investigations into more than 150 other hospitals have not found similar abuse and neglect. However, where were the safeguards within this hospital to identify failures in care and correct them? Where was the management of this organisation in monitoring abuse and establishing the quality of care?
Culturally, I am concerned that this event reflects a fault in how we value our vulnerable populations—those with mental health problems, the disabled and the elderly. Our respect for these populations is apparent in whom we charge to care for them and we undervalue them when we pay little attention to how their carers are trained and managed. However, we do little to respect the ill treated if we do not change the culture of care to prevent these crimes from happening again.
We were all rightly shocked when the BBC “Panorama” programme uncovered this systematic abuse of patients at Winterbourne View Hospital. Vulnerable patients were bullied, pinned down and tormented, not once or occasionally, but systematically. This would be appalling even if this treatment was limited to one staff member. What escalates the abuse at Winterbourne View to a national scandal was the culture of neglect and ill treatment that was fostered throughout the hospital. Even with this widespread negligent culture, the existing accountability safeguards did not detect the abuse.
I see two areas of concern. First, the patients who received ill treatment in the hospital should not have been in the hospital setting to begin with. The noble Lord, Lord Rix, made that point very clearly. Similar stories of misplacement into the wrong care settings have been found all across England, so greater scrutiny must be called for in the determination and monitoring of treatment plans for the vulnerable. In particular, we should explore every option for them to live close to their families and the people who care for them. The provision of less institutional and more local care can be a great safeguard against abuse.
Secondly, the abuse was found in a private, foreign investment-backed firm. As we move towards a system with greater diversity in how health and social care is provided, will the Minister tell the House what oversight is being put in place to ensure that these new forms of care delivery are fit for purpose and free from repetitions of this kind of abuse? In these settings, good management is key to setting the standard for institutional practices. Clearly, there was a failure to lead and train staff effectively and eliminate unacceptable behaviour. In these new methods of care delivery, with less direct government oversight, how can we ensure that management is effective in setting behaviour standards and being held to account?
There is a cultural issue that I would like to raise around training, appraisal and professional development of care staff. Clearly, there was neglect at many levels of the organisation, but in particular I believe that how we value front-line care workers reflects how we value vulnerable populations. The following example has been used before in your Lordships’ House. A very high-profile department store and grocery chain will not let a new employee on to the shop floor without providing basic training on the job in hand and on the corporate culture—and this takes weeks, not days. It is accepted and common practice that staff at all levels are given close monitoring until a probationary period is over and that they are part of an appraisal scheme. This is not overkill; it is to ensure that employees know what they are doing and that employers know what employees are doing and can take appropriate action if there is a problem.
This brings me to registration. I know that the Government are reluctant to regulate for the registration of care workers but, with a large population in all areas of health and social care, the failure to register looks like a failure to value their work. When we start setting a precedent of lower value for these workers, it shows in their professional behaviour. If this vital cohort of workers were part of a registered body, that would send a signal to any companies that see the health and care business as a cash cow. Care workers do a valuable job. They are a resource to be valued and their training is not a cost—something to come off the bottom line—but an investment.
Finally, I applaud the action plan set forth by my honourable friend Norman Lamb. At the same time as we embrace innovative forms of care delivery, we must complement this flexibility with accountability from all levels of care organisations: owners, boards of directors, managers and care workers. We need to stop patients being inappropriately placed in the hospital as their primary care setting and instead design personalised services enabling them to live in communities closer to their families.
Again, I reiterate: how we value care workers reflects how we value the populations they care for. Universal professional standards for care workers should be developed and implemented to create a culture where their work is professionally valued and appraised. We need to know, too, that they will be registered. By moving quickly to implement these reforms, we can make what was a horrible failure in care into an opportunity to prevent its repeat.
Baroness Kidron
My Lords, it is a great privilege to rise for the first time in your Lordships’ House and I would like to take this opportunity to extend my thanks to noble Lords from all sides of the House for their very warm welcome, as well as to the delightful staff whose acts of kindness and gentle instruction have kept my transgressions to a minimum.
I will detain your Lordships only a very short while to tell you my own journey to involvement with young people with learning difficulties. I declare an interest as a trustee of the Paul Hamlyn Foundation, which over many years has done excellent work in the area of learning disabilities, and as co-founder and vice-chair of the educational charity, FILMCLUB. FILMCLUB was founded six years ago as a way of engaging and educating young people with the intention that they should see a broader world. It has been a very successful endeavour, with many tens of thousands of young people each week watching, reviewing and debating subjects both in and out of the curriculum, and in doing so learning about a world much richer than the one they usually inhabit.
One of the surprising outcomes of the scheme was the number of SEN teachers in mainstream and specialist schools who adopted the FILMCLUB programme to teach young people with learning difficulties. For some it was simply a peaceful moment for a restless mind; others found a place where they could engage with subjects and emotions that they recognised but in daily life struggled to articulate. It is one small space where young people—some with very challenging behaviour—found a method to communicate on their own behalf what concerns them.
I am by profession a film-maker and it was in this capacity that I was introduced to Louise, a young woman with complex needs who—as is the Government’s ambition—lives in her community with her family. She is exemplary in her achievements against the odds—bright, humorous and ambitious to make the most of her life. She is an advocate for Young Advisors and a keen sailor. She also has cerebral palsy, is confined to a wheelchair and needs a communication aid to speak. Louise’s life has been blighted by a series of disagreements and misunderstandings about where her physical disability ends and her learning difficulty begins, putting her family at odds with those who deliver the support she needs.
Louise has been shunted between schools of every possible variety, each in turn unable to cater to her complex needs. In her last school, for young people with physical disabilities, she was accused of attention-seeking, resulting in punishments that included encircling her wheelchair with furniture, taking her from her chair and laying her on concrete paving, and removing her communication aid. These punishments, which were casually meted out by staff with little knowledge of learning difficulties, were experienced by her as acts of incomprehensible cruelty. When I asked her how the removal of her communication aid made her feel, she said, “It was as if they put tape across my mouth”.
Louise lives in her community with her very loving family, but still her treatment was out of sight of her parents. She did not have the capacity to describe what was terrifying her, but she did protest at going to school. She started self-harming and repeatedly said that she wanted to die because she was “bad”. Feeling powerless at her distress and unable to get answers from those entrusted with her care, her family withdrew her from school permanently to give her 24-hour care themselves. She was 12 years old.
Winterbourne was a shameful episode, both for those who inflicted violence and humiliation on the vulnerable and for us as a community. However, my concern is that in moving back to community-based support we do not overlook the indignities and cruelties routinely experienced in other contexts, because a culture of “not understanding” can, as in Louise’s case, prove as abusive as deliberate criminal acts.
There has been a broad welcome of the Government’s plan to transfer more than 3,000 people incarcerated in inappropriate care settings, but we must have concern that the burden of care is not subtly or cruelly transferred on to families, many of whom are already on a lifelong journey of supporting loved ones with complex needs, without them being assured of a fully resourced effective implementation, delivered with a level of competence that meets the needs of even the most challenging, for the newly released and for those already struggling with care in the community. The legacy of Winterbourne must be that the care provided in our all institutions and services is imaginative, compassionate and trustworthy.
It is the tradition of a maiden speech not to be controversial, and I will leave it to others in this Chamber more expert and able than I to judge if the Government’s response is adequate to the task of providing a level of care in institutions and public services of which we can be proud. However, it is my hope that in my time in this House I will be able to lend robust support to the voices of the young and those on the margins to whom we often do not listen closely or hear clearly when they try to speak.
I thank my noble friend Lord Rix, who has been tireless in his support for people with learning disabilities, for bringing today’s debate to this House.
Baroness Browning
My Lords, it is a great pleasure to follow the noble Baroness, Lady Kidron, and to have this opportunity to congratulate her on her maiden speech. She has been acclaimed both nationally and internationally as a film-maker, and we must add our congratulations on her choice of subject matter in her maiden speech. We look forward to future contributions from her as the years go by.
I begin by supporting and joining the call from my noble friend Lady Jolly on two points—first, on the registration and structure of care workers in health and social care. I must say to my noble friend on the Front Bench that there is a real body of steam behind this. I know that my noble friend Lord Howe has said that he will keep an open mind on this, but I say to my noble friend that this is not going to go away and the sooner we get on with it, the better. Also, I join my noble friend Lady Jolly on the question of accountability of those upstream owners of private homes and hospitals. Again, complex though this issue may be, I hope that the Government will address it as a matter of urgency.
As my noble friend Lord Touhig—if I may call him that—said, a third of the patients at Winterbourne View had a diagnosis of autism. I am genuinely filled with despair that, after the high profile of the Bournewood case some years ago now, we are still looking at people with a diagnosis of autism being held in a hospital, and the views of parents and carers being dismissed by so-called professionals. I thought we had moved on from there and I am going to ask my noble friend to carry forward a suggestion I made when we had the Statement earlier in the week about the Mental Capacity Act, which I will come to in a moment.
First, I will say something very briefly about autism and challenging behaviour. There is no doubt that there are people with an autistic diagnosis who have comorbidities—they may be learning-disabled or have specifically diagnosed mental illnesses—and they are complex cases. In another place over many years I raised again and again the difficulty for psychiatrists who are dealing—particularly but not exclusively—with adult patients who present with very challenging and disturbing behaviour. However, sometimes when they are seen by psychiatrists with an understanding of and expertise in autism, it is possible to unscramble what appear as perhaps rather obvious mental health symptoms, when in fact those symptoms have an autistic base.
Autism is not a mental illness and very often the challenging behaviour that is presented does not have a psychotic base to it at all. People who work with adults with autism who are challenging will know that, with the right package of support and particularly with the right expertise of the people working with them, all too often you can identify the triggers that create that autistic behaviour. Why? It is actually rather simple: it is because the autistic mind works differently from the way other people think, and rationalisation is a very complex area. I have known of many—and I do mean many—autistic adults who have been held in some form of detention; some voluntarily, some not. When they have been placed in an appropriate setting with professionals who understand what those triggers are and why their often challenging behaviour presents in a certain way, with the right package of support they have been able to live and be supported in the community rather than locked up.
I say to my noble friend, we really cannot keep going round and round in circles, coming back to these high-profile cases where we seem to have learned nothing. I was involved in the Bournewood case with patient P, who was detained in a mental institution, and it was only when his carers went through not just all the courts in this country but to the European Court and got a judgment there that he was allowed to be released—and I use that word deliberately—from his institution when all the expert advice was that he should remain there. We have to do something. This is about fundamental human rights for a group of people who are unable to make the case for themselves. We, as politicians and in this House, have a duty to ensure that the structure is out there for those who represent them—whether they be parents or carers or people professionally appointed as advocates on their behalf—and that those human rights are at the forefront of what happens to them.
As always, I congratulate my noble friend Lord Rix. His work in this field is an exemplar for us all. Today I have written to the chairman of the Joint Committee on Human Rights, Dr Hywel Francis MP, because I have had grave concerns for some time that the Mental Capacity Act, on which I sat on both the pre-legislative scrutiny and the Bill committees in another place, is not in practice supporting the people whom Parliament intended it to support.
I say again to my noble friend that the Care Quality Commission needs to be more rigorous—we hope that we will have learnt lessons from this tragic case—and that the Mental Capacity Act is not doing what it should in terms of parents, carers and, in particular, patients. I also suggest that the deprivation of liberty safeguards are too narrowly defined by the courts and that the whole framework needs to be reviewed, taking account of the way in which the courts implement the framework.
I hope that my noble friend will understand the call not just for the Joint Committee on Human Rights but for the Government themselves to completely review the implementation of the Mental Capacity Act—an Act I thoroughly support. We will not get to the bottom of some of the problems that we are discussing today unless we are prepared to do that.
Lord Addington
My Lords, this is one of those debates where I think that the general element of agreement is going to be overwhelming: we should never have got anywhere near this situation; there were structural problems which were not addressed; and, as has clearly been pointed out, there was also criminal activity. The real question that we face is: how can we minimise the chances of anything like this happening again?
Having said that there is a considerable degree of consensus, looking at exactly what happened at Winterbourne View, we probably had a perfect storm for abuse, as I think it was described in some of the briefing that I received. There was bad management and a disinterested owner, who made no investment, which meant that care workers, who were badly recruited and badly trained, were left to deal with people with what has been called challenging behaviour. To play devil’s advocate for a second, if you meet challenging behaviour—for instance, people who self-harm, are unable to communicate and occasionally lash out through frustration—and you have been trained only in basic restraint, that is what you will use. There is an almost iron inevitability about what will happen unless there is somebody alongside you telling you that there is another way. In this case, such a person was not there. Therefore, it was almost inevitable from the word go that something like this would happen. We should remember that it took less than five years for this culture to be put in place. It was not a slip; it was a fall into very bad practice, and there is no way that we can ever allow it to happen again.
I want to take up a point which my noble friend raised earlier, on the training of staff. The care and support workers at Winterbourne View should have been given better training and—something that is incredibly easy to say but apparently incredibly difficult to do—they should have been told when to call for support. As anyone who has dealt with front-line support in public service will know, getting that message across at any level is difficult.
I have had a discussion with numerous Ministers from numerous parties over many years about many issues relating to people with disabilities. I have pointed out that the people in charge need to be told that the tick-box method does not work. They will need support, and that support will differ as circumstances change. Often, the Minister or senior official has said, “Yes, we’ll do it”, but it does not happen. I have had meetings with Ministers of all Governments and have asked when they are going to implement this. The response has been, “But we said we’ll do it in legislation or in guidance”. However, it does not happen on the ground. That is clearly the situation that we have here. Therefore, we created something that was bound to go wrong—perhaps not as wrong as it did but it was bound to go wrong.
We have to bring about worker registration and make sure that these people have a responsible job where they can develop a career so that they have some stake in it, as well as a stake in making sure that their co-workers are correctly registered. We could talk about whistleblowing here. If we make sure that people have a job where they have a future and a clear duty, the chances of this happening again will go down. We can never totally remove it. Indeed, the idea for better inspections, et cetera, by those higher up are, of course, needed. We can start to take away a part of this cocktail of disaster; we can start to remove it. We can have a group of people who have a stake and who will go back in again.
I do not envy my noble friend her job, but I hope that when she replies she can give us a clear idea of exactly what process we are talking about and where it will be implemented. We must have people who are trained well enough to recognise that they need support and who are willing to ask questions. We must start to work with the situation for those with autism. The noble Baroness, Lady Browning, has been an important part of my secondary education on autism. Once we start working in that field, we need a different approach. There is always a danger that those of us dealing with a disability will think that it is like the disability we have. Probably our problems with bureaucracy are more similar than our actual on-the-ground experience. Unless our front-line workers are better trained and told that it is okay to ask for help and support, such problems will occur again. I hope that my noble friend will say that steps are being taken. We are trying to ensure not that it does not happen again but that the next time it happens we are better able to deal with it because these problems will not go away.
Baroness Hollins
My Lords, I thank my noble friend Lord Rix for his inspiration and tenacity on behalf of people with learning disabilities, and I congratulate the noble Baroness, Lady Kidron, on her eloquent maiden speech, which reflects her long-standing commitment to social justice.
I know quite a lot about learning disability. I know about it as a parent, a psychiatrist, a policy maker, and I also chair a charitable organisation that creates communication resources about life and relationships for people with learning disabilities. First, I commend the Government on their report, for the programme of action signed up to by 50 organisations, and for setting out what good care should look like. I also commend the serious case review conducted in such a painstaking way by my former colleague Dr Margaret Flynn.
The BMA under my presidency recently commissioned an expert round table in your Lordships’ House at which Dr Flynn spoke. I shall draw on the notes from that meeting in what I say. There is a story to tell which begins with a question: why were these very vulnerable people at Winterbourne View at all? The existence of Winterbourne View and similar hospitals represents a commissioning failure. Hospitals such as Winterbourne View have been considered unsuitable for more than 20 years. Jim Mansell’s first report on challenging behaviour in 1993 criticised the widespread core practice of exporting people with behaviour that challenged. A drawn-out, long-stay hospital programme that originally began after institutional scandals in the 1970s and 1980s was completed only just three or four years ago.
Even before the closure programme had been completed, new mainly private hospitals were already touting for business. As a policy adviser in 2001 I drew attention to this trend, as did others, but there were no incentives in place to encourage local providers to develop adequate local support for people. With some notable exceptions the practice of exporting patients similar to those who ended up in Winterbourne View continued. The sad journey of most of these patients began long before they arrived in hospital. The serious case review showed that. There were many lost opportunities to provide better, more personal and local care, but they were missed. Why were they placed such a long way from home? Typically a crisis happens just before a weekend and risk-averse professionals seek an emergency hospital bed somewhere, anywhere.
Many of these adults have had sad lives; they may have been abused, bullied or have had a traumatic bereavement. Such dislocation to a distant hospital can further disturb and re-traumatise them. On entering hospital, vulnerable adults depend on the nurses to get to know them and to understand and meet their needs, and on the other members of the team to draw up an active treatment plan. We have heard a great deal about the lack of compassion in different types of hospitals, but Winterbourne View was the site of systematic abuse by poorly paid and untrained staff with the wrong attitudes. They were unable to understand the communicative function of their patients’ behaviour; they lacked the skills to support them in a respectful and safe manner.
I am pleased to see the roles envisaged for Health Education England, the professional senate on learning disability and Skills for Care to turn this around. However, I agree with the noble Baroness, Lady Jolly, and the noble Lord, Lord Addington, that these staff need to be better supported. Some will need therapeutic supervision to enable them to care better.
Distant placements make it difficult for families and carers to provide oversight and protection, and yet the best safeguards for people with severe learning disabilities are the people who know and love them. I am glad that the DH final report and the concordat recognise that services must be provided locally and that containment must give way to personal care and personal treatment plans. The ordinary life that campaigners such as David Towell have argued for for so many years seems to be within the reach of even those whose behaviour challenges. Does the Minister believe that the timescale proposed to get people back home is realistic? I hope so.
Choice—an OFT-heard mantra—is a key principle of the Health and Social Care Act, but what sort of care would service users choose if they were able to? This is the question that those who commission and provide services need to ask. I am encouraged that the report expects people with learning disabilities and family carers to be involved in future CQC inspections.
Too often those close to vulnerable adults—many of whom wish to help—are still excluded from decision making. Personal budgets and direct payments provide one mechanism for more personal care but for people with behavioural challenges pooled budgets are needed to avoid financial arguments about whose responsibility it is to provide effective and timely care and support. People were placed at Winterbourne View by the NHS largely, but the NHS looked to the local authority to take responsibility for funding their rehabilitation. Where was the incentive? They were out of sight and out of mind. Does the Minister think that the new plans will provide adequate incentives to get people home?
NHS-funded care, whether in hospitals or the community, should deliver high-quality assessment and treatment and it should be evidence based. Winterbourne View was a hospital; its patients had mental health needs. Most were detained under legislation but they received little in the way of specialist health care. It seems to me that people with severe learning disabilities are still seen as second class citizens and not afforded the same rights as other citizens. The 2001 White Paper, Valuing People, challenged those assumptions and raised the hopes of people with learning disabilities and their families, but access to the same health care as others is still denied to many. This is as true of mental health services as physical health services.
Underfunding, a lack of 24/7 working, the separation of specialist learning disability services from primary care and mental health services means that even those specialist services cannot support and deliver the safe and timely care that people need. For example, in the case of specialist psychological therapy services, IAPT services and highly specialist psychotherapy services have not been adapted for people with learning disabilities. This is especially important for people whose behaviour challenges. Can the Minister clarify the expectations of the Government with respect to the mental and physical healthcare of this group? Does parity of esteem apply to this patient group too? It is disappointing that there is so little in the report about the range of mental health treatments that people need.
My first boss in learning disability, Joan Bicknell, recruited me back in 1981 because I was a medical psychotherapist and a family carer. She lectured extensively about the emotional lives of people with learning disabilities. I remember how sceptical her audiences were. How could people with little spoken language have feelings? Is this the same attitude that makes it possible for so-called carers to abuse the people they are caring for? Some of my research studied the effect of abuse and bereavement on people’s behaviour and emotions. To help their carers understand their inner world, I turned that research into picture books about life experiences for them to read together. More research is needed to help us understand what happens in people’s homes and what leads to behaviour that challenges. Can the Minister tell us whether there will be substantial investment in research, similar to that being used at King’s College to develop a care home research network for people living with dementia?
Winterbourne View hospital failed to meet the needs of these adults. How can we be sure that this time we do not forget; that the lessons from this tragedy are truly learnt and safeguards are put in place?
Lord Maginnis of Drumglass
My Lords, I echo what has been said on the importance of closing these large impersonal assessment and treatment centres for people with a learning disability. Good-quality provision that is developed and delivered locally must be our aim and we must keep a watchful eye on local authorities, clinical commissioning groups and the Government to ensure that this happens. I am grateful to the noble Lord, Lord Rix, for raising this matter this evening, despite his domestic pressures. Perhaps I may say to him that we hope and pray that Lady Rix is soon well again.
I want to focus on what happened to the 48 patients who were in Winterbourne View hospital over the years from the time it opened in 2007 until it closed last year. That will, I believe, highlight the extent of the challenge that the Government’s programme of action faces. The Government’s report shows that in March of this year, 26 former Winterbourne patients had moved into a range of social care supported arrangements and 22 patients were in various in-patient facilities. I am sure I will not be alone when I say that one learns with considerable anger how 19 of these people have had to be subjected to a safeguarding alert in their new location.
In September 2012 the Government again looked at former patients and found 32 in a range of social care settings and 16 patients in in-patient settings. There were initial safeguarding alerts or active safeguarding procedures for six people. One of these people, Simone Blake—then just 18—faced some of the most outrageous and inhuman abuse at Winterbourne View. This included being drenched in water and left shivering and shaking on the freezing ground outside. You may recall her story from the follow-up “Panorama” programme earlier this year.
When Winterbourne closed, Simone was moved to a National Health Service hospital, Postern House in Wiltshire. Postern House was just 40 minutes’ drive from her parents, allowing them to visit her several times a week. In June this year, her parents received a letter from Ridgeway Partnership, the health trust that runs Postern House, telling them that Simone was again the subject of a safeguarding alert and that four members of staff had been suspended. However, the fact that two-thirds of the former patients have now been moved into social care settings shows what is possible and gives further credence to the Government’s programme of action to move all those inappropriately placed in hospitals to social care settings by June 2014. None the less, the fact that a significant number of former Winterbourne patients, such as Simone, have had to be subjected to further safeguarding alerts is shocking and should not be forgotten, and nor should it be overlooked that 27 people have required support subsequent to the trauma experienced at Winterbourne View hospital.
What assurances can the Government give that, as they seek to move those inappropriately placed in hospitals into community settings, they will be kept safe and offered support by appropriately skilled professionals? This challenge applies not only to the former patients at Winterbourne View but to every one of those others that the Government, through their programme of action, intend to relocate. Forgive me if a note of cynicism creeps into my voice, but at a time when Prime Ministerial apologies are coming two a penny on time-distorted issues from the distant past, one expects a great deal more than that in respect of this existing problem. What is so wrong must be rectified on an immediate and ongoing day-to-day basis. I want the Minister’s assurance we are not merely going to pay lip service through a process that is delegated and forgotten about until we reach an accounting period in 2014. Can she reassure us that 2014 will be an effective staging post on a journey that has progressed with full government support and participation based on professionally led community care that is delivered locally? We do not want a token start date for the Government’s programme of action. The year 2014 is too far ahead if you are someone like Simone Blake.
Baroness Emerton
My Lords, I, too, congratulate the noble Lord, Lord Rix, on initiating this debate, and I congratulate my noble friend Lady Kidron on her outstanding maiden speech. I want to concentrate on the management of change in the situation that we find ourselves in, and perhaps I may take noble Lords back to the beginning of Winterbourne. I was called in with Professor Jim Mansell to look at the footage before it was put out on television and asked why in the late 1970s we had been able satisfactorily to relocate 1,115 and 1,112 patients respectively from two large institutions, all suffering from learning disabilities, after 10 years; and why, in 2011, we find the same things happening now as happened in the late 1970s.
I want to raise the issues that we found. First, what were the principles and what were the things that needed to be looked at? We needed a multi-professional team, a strategy, a programme and research. We had no idea that the project would take so long, but we set about it. I was most fortunate in recruiting the then young Professor Mansell as a psychologist and researcher. It was his first post, other than working at the Kushlick centre, since leaving university, having changed his degree after the Ely inquiry. He was outstanding in the field of care for those with learning disabilities and continued his research right up to his sad death last year. The principles were that patients should return to their district of origin; that they would be individually assessed and diagnosed with their treatment set out; that they would work to a programme; that the staff would be trained to meet that programme; and that accommodation would be suitable to the need. Membership of the project team was large—we had a psychiatrist, a psychologist, a researcher, members of social services and we set up a university department. The principles were clear—that no patient would be discharged without an assessment, training programme, support programme and suitable accommodation.
The barriers were enormous. The psychiatrists at the hospital were totally against it being closed and the patients themselves were not happy about going, because it had been their home for a long time. The relatives became very edgy because they thought that it was a safe haven and that going into the community would be unsafe and the recipients in the community had a little of the “not in my backyard” attitude. Finance was an issue but at the time it was government policy and we were able to get funding. On the question of accommodation, we had to look at all the different types of accommodation that might be available—houses, housing association flats, and very small units.
The patients with less challenging behaviours were the easiest to relocate. Those with more challenging behaviours were more restricted: specialist skills were required to care for them. Fortunately, because we had Professor Mansell, we were able to relocate all of these with the right treatments and staffing levels. The training programmes were for support workers, who were trained but obviously not registered, at that stage, since they had never been registered. We also had trained nurses and social workers and we went through the programme. Resistance was overcome by influence, persuasion and personal visits to local councils, social services and parents themselves, and by going to hear what the patients had to say. We made sure that the team, which worked extremely hard, remained committed to overcoming the barriers.
Near to the closure of the 1,500 bed hospital, most of the patients had been relocated back to the sites from where they had originally come, but some—mostly those with challenging behaviours—remained. We had to persuade those within the counties and the districts: we had seven local London districts as well as Kent and Sussex. It took time to persuade them that it was possible, but Professor Mansell was instrumental in persuading people that even those with the most severe challenging behaviour could be housed in the community. We eventually succeeded in getting them out—the decisions were taken and the assessments went on—and the communities began to accept them and were happy. We found, through visiting them, going round to tea with the residents, that they had settled and that the community had accepted them. The budgets were sorted and the patients were happy. I remember a flat in Camberwell where three elderly gentlemen who had been in hospital for 30 years said what a treat it was to be able to go to a fish and chip shop; they also invited us to tea.
The programme would not have succeeded without the leadership of Jim Mansell and the rest of the team. It would not have succeeded had we not used leadership, influence and persuasion, or if we had not trained the staff. Today, the noble Baroness, Lady Jolly, and other Members have mentioned the need to register support workers. We cannot go on without having that registration of support workers, who are trained to understand the special needs that go with learning disability.
The point of making this reminiscent therapy that I have gone through is that today we face the same barriers and issues, and we have to overcome them. I am grateful that we have been able to see the report from the Government but we need to address these barriers urgently. If we do not, it will be those who suffer from learning disabilities who will be disadvantaged.
Lord Hunt of Kings Heath
My Lords, first, I pay tribute to the noble Lord, Lord Rix, who for so long has been a champion of people with learning disabilities. I always remember the late Lord Carter, who was the Chief Whip a few years ago, advising me that the noble Lord, Lord Rix, always gets his way in the House. That was certainly my experience as a Health Minister and my advice to the noble Baroness, Lady Northover, is to reflect very strongly on the points that he raised. I also very much welcome the maiden speech of the noble Baroness, Lady Kidron, which was excellent. We look forward to her contributing to our debates in the future.
The noble Lord, Lord Rix, made a number of very powerful points about the shocking events at Winterbourne View. He started by drawing attention to the contrast between policy and implementation. I suggest that that gap is what lies behind the unease clearly felt by many noble Lords today. We have had the welcome news from the Government that all current hospital placements are to be reviewed by next June and that everyone there who is inappropriately placed will move to community-based support as quickly as possible, and no later than June 2014. I would have thought that any assessment is likely to mean that many people will need to move to locally-based community care. Like the noble Baroness, I ask whether this is a realistic timetable in the circumstances in which health and social care finds itself at the moment.
We are going to expect a lot of commissioners, yet commissioning has led many people down. It is these commissioners who have been prepared to pay for people with learning disabilities to go miles and miles away from home and who have then forgotten about them. Does the noble Baroness, Lady Northover, really think that the commissioners are in a position to do what is required?
I would also refer to the changes in the National Health Service. I do not think that the primary care trusts can say that they dealt with this matter with any distinction but, my goodness me, what are clinical commissioning groups going to do? Can we be assured either that this is going to be done at a national level—or at least through the local offices of the national Commissioning Board—or, if it is to be done by clinical commissioning groups, that they will have the people with expertise? I am sceptical because there is no sign yet that clinical commissioning groups have people with enough seniority or expertise to do this kind of commissioning.
The noble Baroness, Lady Browning, made an important point about the owners and directors of these private institutions and their responsibilities. I have received a brief from Castlebeck, the people concerned with Winterbourne View, which details the actions it has taken and says that a new board of directors is in place. It also says that the shareholders who owned Castlebeck at the time of Winterbourne View have never drawn a return at any time and have now lost all their investment. However, there are still some serious questions about owner responsibilities. I refer noble Lords to the serious case review, which stated:
“Castlebeck Ltd appears to have made decisions about profitability, including shareholder returns, over and above decisions about the effective and humane delivery of assessment, treatment and rehabilitation”.
The review’s authors also say that,
“the corporate responsibility of Castlebeck Ltd remains to be addressed at the highest level”.
I would be grateful if the noble Baroness could say a little more about how the Government intend to do that. At the very least, will the Government require private companies to name the owners and members of the boards and details of their financial structure before they can be licensed and registered to provide publicly-funded care?
I will not labour the point on the regulation of health and social care workers. This will be the third time this week that the issue has arisen. There was also the Statement on Monday and the debate on nursing launched by the noble Baroness, Lady Emerton, only two days ago. However, persuasive arguments are being put forward for the regulation of these workers. On Wednesday, the noble Earl, Lord Howe, relied on the kind of voluntary registration that he proposed during the passage of the Health and Social Care Act. He also made it clear that the Independent Safeguarding Authority can take action to bar care workers from working in regulated activity. The point is that there are many circumstances where such workers may not have been brought to the attention of the Independent Safeguarding Authority, but may have been dismissed by, perhaps, the National Health Service or an institution and can simply go on to work in another place. We have examples of where that happens. The noble Earl also said—this is in relation to the NHS but it is just as relevant to Winterbourne View—that nurses,
“who are themselves subject to professional regulation … should not be asked to undertake a task for which they are not trained”.—[Official Report, 11/12/12; col. GC 295.]
He also said that healthcare assistants come under the supervision of those nurses. That ignores the strength of the employer as opposed to those healthcare workers and nurses. I accept that regulated nurses clearly have responsibilities, but to blame them for delegating responsibilities to healthcare assistants is wrong and unfair.
My noble friend Lord Touhig made some good points about hate crime and the challenge of care in the community. I want to end on that point. Care in the community has been the policy of successive Governments for more than 30 years. We now have a situation where money is very tight, particularly in local government, but also in the health service. The National Audit Office today signalled some of the pressures in the system. I ask the Minister this question. Do Ministers really understand what is happening on the ground? I do not think they do. They are living, not in a dream world, but one which has no link with the reality, the pressures and the strains. I end, as I started, with doubts about how on earth this change can be made within 18 months when the whole system is under such acute pressure.
Baroness Northover
My Lords, I, too, congratulate the noble Lord, Lord Rix, on securing this debate. I am glad to see him back in his place and wish him and his wife well. He has a formidable record in this area and we are pleased to see him back here. He has been fighting for a long time for the rights of people like Simon, whom he mentioned.
There can be no more important issue for us as a society than how we treat our most vulnerable people, as my noble friend Lady Jolly and others emphasised. I, too, was impressed by the maiden speech of the noble Baroness, Lady Kidron. It was very moving and she absolutely rightly emphasised that this debate is about cases like that of Louise. If we cannot get things right for people like Louise and her family, we are not getting anything right.
I thank the noble Baroness, Lady Hollins, for her praise for the report issued this week. I assure the noble Lord, Lord Maginnis, of the huge commitment of my honourable friend Norman Lamb in this area. That commitment shines through in this uncompromising report. Stimulated by this terrible case, it does not just deal with Winterbourne View but looks at the whole sector with its radical proposals—which I am glad so many noble Lords welcomed. Noble Lords have, if anything, asked if those can be done and delivered, rather than questioning whether this is the right route to take. There is a firm and detailed timetable of action. I hope that noble Lords have marked that, including the noble Lord, Lord Hunt. I am sure that noble Lords will hold us to account. My honourable friend Norman Lamb will oversee this. He will leave organisations in no doubt of his commitment in this area.
The scandal that unfolded at Winterbourne View was devastating but it has spurred us into action. Straight after the abuse was exposed, the Government commissioned an in-depth review. Noble Lords have referred to the report published earlier this week. As we said then, the Winterbourne View abuse was criminal. Staff whose job was to care for people instead routinely mistreated and abused them—as my noble friend Lady Jolly, the noble Lord, Lord Maginnis, and others said. Management allowed a culture of abuse to flourish. Warning signs were not picked up, and the concerns of residents’ families, and of a whistleblower, went unheeded.
As I have said, this case made us look again at how we care for one of society’s most vulnerable groups of people. Winterbourne View provided care for people with either learning disabilities or autism, together with mental health problems or challenging behaviour. Around the country some 15,000 people have similar needs, of whom some 3,400 are in in-patient settings. Many people receive good care in these settings but—as my honourable friend Norman Lamb, the noble Lord, Lord Touhig, and others have said—hospitals are not where people should live. Across the country, far too many people with learning disabilities or autism are in hospital and staying there too long. As the noble Lord, Lord Rix, and others emphasised, we have known for a long time that with the right support the vast majority of people with challenging behaviour who also have autism or a learning disability can live happy, fulfilled lives, close to their families and in their own communities—as Simon now is. When someone needs to be in hospital, it should be for a short period, in a small unit as close to their home as possible. I, too, pay tribute to Jim Mansell for all the work that he did on this.
We know what change is needed. It is now time to make sure it happens. First, owners, boards and senior managers must take responsibility for their services. I assure the noble Lord, Lord Rix, that we will examine how corporate bodies and their boards can be held to account for the provision of poor care and for harm experienced by people using their services. We will consider both regulatory and criminal sanctions, and will set out proposals in this area in spring 2013. I look forward to the noble Lord’s comments on those proposals. Of course, the noble Lord, Lord Hunt, is right to focus on the corporate responsibility of Castlebeck and other companies. I am sure that he will also scrutinise with great care the proposals that we bring forward. In addition, we will explore whether we can introduce a test to ensure that directors are fit and proper persons to oversee care. The CQC will consider a best practice model of care as part of its regulation of services from 2013. It will also check whether all providers are following national guidance or similar good practice. Where standards are not met, it will take enforcement action.
We will also stop people being placed in hospital—unless hospital is actually the best place to be. All current hospital placements, as noble Lords have referred to, will be reviewed by June 2013. Everyone who is there inappropriately will move to community-based support as quickly as possible—and no later than June 2014.