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Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Wednesday 1 June 2011

Last night’s Panorama – Anatomy of a scandal

Last summer I spent some time researching the abuse of adults with learning disabilities in Cornwall, to get a sense of the mechanisms that were – and weren’t – in place to pick up on this abuse and ensure it didn’t happen again. As I watched last night’s Panorama, showing institutional abuse of adults with learning disabilities in a locked ward near Bristol, I thought again about some of what I learned, and how it mapped onto what occurred in Winterbourne View.

Accountability of support staff

Whilst the program was airing, I watched some of the comments on Twitter streaming in. Charon QC, among others, expressed a hope they would face criminal prosecutions. I hope so as well. Something that shocked me about the abuse in Cornwall is that not a single person ever faced a criminal prosecution. I’m not sure the abuse there was so different to what we saw in the Panorama footage, in their investigation report the Healthcare Commission and Commission for Social Care Inspection wrote: 
...instances of poor or abusive care were recorded in personnel files, correspondence, and notes from investigations. These incidents included staff hitting, pushing, shoving, dragging, kicking, secluding, belittling, mocking and goading people who used the trust’s services, withholding food, giving cold showers, over zealous or premature use of restraint, poor attitude towards people who used services, poor atmosphere, roughness, care not being provided, a lack of dignity and respect, and no privacy. All those living on Lamorna Ward were subject to this type of behaviour but two individuals were targeted frequently.
I was interested in why no staff were ever prosecuted, so I made a Freedom of Information Act request for the police report. The request was initially refused – police reports into criminal investigations are rarely released under FOI – but I successfully appealed on the basis that the investigation concerned not just private individuals, but treatment of highly vulnerable individuals at the hands of NHS staff – agents of the state. You can read the report here

Looking through the report there seem to be several reasons why there were no prosecutions, many of which would not an issue in the Panorama case.  At the time of the Cornwall abuse investigation, the Mental Capacity Act 2005 had only just come into force, and so nobody could be prosecuted for the new criminal offence of ill treatment or neglect of someone who lacks capacity.  They could, however, have used s127 of the Mental Health Act in some cases.  I hope these are charges the police will look as using in relation to staff at Winterbourne View.  Primarily police in Cornwall looked at ‘ordinary’ offences like assault, which have a very short statute of limitations – 6 months.  I am not sure whether they were recorded as disability hate crimes; I hope they would be today.  When people are deprived of their liberty in care settings, when they have very profound communication problems, it may take many months, if not years, for incidents of abuse to surface, meaning prosecution within the limitation period can be much less likely.

According to the police report, the CSCI and Healthcare Commission were of very limited help in their investigations:
Obtaining the information HCC and CSCI had used in their investigation that resulted in the multi-agency report was challenging due to Data Protection issues. When eventually a small portion of information was provided, it was merely lists and very brief summaries of what had been obtained rather than copies of the documentation itself. Those lists were so heavily edited as to be virtually useless to the investigation. [7.14]
I’m no expert on the Data Protection Act, but I am surprised that Cornwall Partnership NHS Trust was able to share the documentation with the police but the regulator itself wasn’t.  The evidence the police based their investigation on came directly from the perpetrator organisation.

A second reason there were no prosecutions was a problem with the evidence obtained.  It would seem that the findings of an internal review by the trust, cited in the quote from the investigation report above, were an insufficient basis for a criminal prosecution.  In Panorama we saw staff documenting incidents; their reports bore little resemblance with the reality we had just witnessed, and yet these are the records that survive, and what inspections and investigations would be based on.  People who are subjects of abuse within the care system are usually not in a position to document or communicate what is happening to them.  Even when they are able to communicate what has happened, the accounts of people with cognitive disabilities are often discredited – even by those who love and care about them.  Simone’s parents chose to believe that her allegations of abuse must be false, because what she was alleging “wasn’t allowed”.  There is a serious danger that the police and CPS and even juries will take that attitude as well.  In a case in 2009 the CPS chose not to prosecute a serious assault on a man with mental health problems, because a psychiatric report confirmed that he could – at times – have a distorted perception of events.  The CPS failed to ask the psychiatrist to consider whether on this occasion his perception of events was distorted.  The judge found that their decision not to prosecute had been irrational, but furthermore that in itself the decision not to prosecuted had violated his Article 3 rights to protection from inhuman and degrading treatment.  To have one’s account discredited purely on the basis of your diagnosis is also a form of inhuman and degrading treatment.

I have no idea what steps Cornwall’s police and the CPS took to check whether people could offer reliable testimony.  In many cases, however, people will not be able to no matter how much support is in place.  In one particularly sad extract from the Operation Apple report, officers conclude that a man who alleges he was raped probably has been subjected to a serious assault, but they feel they can’t extract the truth from fantasy in his bizarre account of it.  Difficulty evidencing criminal acts is one reason why we should consider people who are deprived of their liberty, who have particular difficulties communicating, especially vulnerable to abuse.  Systems should be in place to ensure we are not reliant on criminal prosecutions as the only effective deterrent, because even with the best efforts of police and CPS, obtaining evidence to secure prosecutions can be extremely difficult.  In Winterbourne View, staff clearly felt entirely immune from police enquiries; at several points they taunted residents that the “police don’t care”, or they would tell the police that the residents hit them first.  I wonder, if the Panorama team had not been there, what the police would have done if somehow Simone or her parents had tried to alert them to what was happening.  How would they have weighed Simone's testimony against Wayne's?

One of the things that shocked me about the police report in Cornwall was how many acts that to the regulator were clear abuses, were not regarded as criminal acts by the police.  Just to take some examples:
The allegation in relation to (…V…) was that in 2005 he was restrained to prevent self-harm by strapping both hands to his wheelchair or his bed... Documentation relating to the care and treatment of (…V…) was researched and no criminal offences were identified. [8.9.1-2]
The bear hug technique and the lap restraint were approved methods of restraining a potentially violent person so that necessary medication could be administered... No criminal offences were identified. [8.33.4-5]
The allegation in relation to (...AA...) is on either 11 or 12 February 2006 he was given a cold shower by unknown member of staff...2 An incident list clearly shows the challenges staff have whilst attempting to care for (...AA...). He has been violent, assaulted staff and other service users, probed his own rectum causing bleeding, self harmed by hitting himself and spat out his medication... No criminal offences were identified. [8.14.1-3]
Several things stand out reading this.  The first is that the police report emphasises over and over again how ‘challenging’ the residents were to care for.  Recalling the Panorama footage, the staff there emphasised in the incident reports documenting restraint how ‘difficult’ the residents were being; it is reports like these that formed the basis of the Cornwall investigation.  The police and CPS seem to have uncritically absorbed this narrative and run with it.  The second is that they clearly fail to apply the test of s6 Mental Capacity Act 2005 of when restraint is appropriate.  The Act had only just come into force at the time, but today I hope that police realise it simply isn’t good enough to say that someone was restrained because they wouldn’t take their medication: was the act of restraint necessary and proportionate to the likelihood and severity of the harm that would have been suffered otherwise?  My fear is that police and the CPS may not be skilled and knowledgeable enough of either the MCA or social care more generally, to be able to assess what constitutes a serious risk, a proportionate response or ensuring that all other less restrictive avenues of action have been exhausted first.  I hope they take expert advice when investigating matters like this; and I hope that advice does not come from the self-same providers that they are investigating. 

It surprises me that the police and CPS in Cornwall didn’t view restraining someone for 16 hours a day in their wheelchair a form of assault, especially when care experts regarded this as unnecessary and abusive.  It surprises me they didn’t regard forcible cold showers a form of assault as well.  Last night’s Panorama, showed Simone being given a cold shower, then drenched again outside in freezing weather, then tormented in a cold shower yet again.   I found myself wondering whether the police and CPS might have reconsidered their decision that a cold shower did not constitute a criminal act if they had seen the footage.  Part of the problem is that misperceptions of what can be legitimately done of in the name of care may distort what would clearly be an assault if it happened to somebody without a disability in their own home.  Perhaps even if it is accepted staff acted unlawfully, there is a tendency to interpret events as misguided acts of care, without the mens rea for a criminal prosecution.  Many of the worst abuses in Cornwall seem to have been accepted as par for the course in a care settting by the criminal justice system.  My hope is that the availability of television footage showing the distress of residents will bring home to investigating officers in Bristol that they are humans, that they feel distress, just as anyone else would if they were subject to the same treatment.

Criminal prosecutions aren’t the only way to hold people to account, however.  My understanding is that several staff members were dismissed in relation to abuses in Cornwall, but at the time the Safeguarding Vulnerable Groups Act 2006 was not in force and so those staff were not referred to the ‘POVA register’.  They may well still be working in care.

Accountability of management

The danger with Winterbourne View, is that we regard the matter as resolved because the police have stepped in and arrested four care staff.  As Fighting Monsters wrote:
This was not about 4 rogue members of staff. This was about an environment that allowed them to abuse and for that the senior management up to the Chief Executive should be responsible.
There are several ways in which the management structure could – and should – be held accountable.  For some reason, the CPS and police in Cornwall decided not to investigate corporate neglect (see paragraph 7.31).  I'm not sure whether that could be pursued in this case.  One crime that managers almost certainly could have been prosecuted for in Cornwall was running an illegal, unregistered, care home (s11 Care Standards Act 2000).  The CPS and police left this decision up to CSCI, who – as far as I can make out from my FOI requests – never pursued a prosecution.  I’ve never got to the bottom of why they didn't, although I did manage to get them to release hundreds of pages of correspondence on this matter which I’m still working my way through (which I'm happy to share, if anyone wants a copy).

I think it unlikely that no other staff will be dismissed as a result of the Panorama footage.  I hope that nursing managers are referred to the Nursing and Midwifery Council for disciplinary action, and they will give serious consideration to whether they should be struck off.  Personally I find it hard to see how they could be permitted to manage services again – especially the night manager who stood by and watched Simone being abused by staff – but they still deserve due process, and we shouldn’t pre-empt what the standards board will find.

One senior nurse left the organisation and raised concerns, but where were all the other whistleblowers?  It’s something that bothers me in all these institutional abuse and neglect cases, from Cornwall through the Mid-Staffordshire Inquiry to the most recent revelations of doctors having to prescribe water to ensure elderly patients had enough to drink.  Why are doctors prescribing water, and not alerting the regulator?  We know that whistleblowers have a hard time being heard, and may suffer persecution for raising the alarm.  Senior nurse Terry Bryan repeatedly alerted managers and the CQC to abuse at Winterbourne View and he was ignored.  A few years ago nurse Margaret Haywood filmed neglect abuse in the Royal Sussex Hospital for another undercover Panorama episode; she was struck off by the Nursing and Midwifery Council.  Whistleblowers are meant to be protected by the Public Interest Disclosure Act 1998, but one in three nurses who have raised the alarm said it did lasting damage to their career.  Like a lot of support workers, I’ve worked in some truly awful places – albeit none as horrendous as Winterbourne View.  I once worked in a live-in care setting where I had serious concerns about the care quality and management; I and other staff who kicked up a fuss lost not only our jobs but our homes.  I worked in another service shortly after two managers had recently been suspended for very serious allegations; I asked staff why they hadn’t alerted the regulator or the press.  The regulator had only acted after years of them expressing concerns, they said, and they were too scared of the place being closed down and all of them losing their jobs to go to the press.  I have a certain amount of sympathy for staff in this position, but a part of me does wonder whether there shouldn’t be a serious attempt by professional bodies to discipline staff for failing to alert regulators and managers to abuse and neglect.  Of course, this only works if the regulatory bodies take action.

Staff Training

On Twitter and blogs, lots of people are quick to say that we need more training for staff (e.g. this piece).  Staff at Winterbourne View apparently had a week's training; that's more than most places I've worked at have provided.  Decent training is a necessary minimum, but it is just that – a minimum, and we shouldn’t regard it as sufficient.  A few days training (I know I’m being generous here by suggesting it might even be a few days) is pretty unlikely to change the practices and attitudes of the Wayne’s and Graham’s of this world.  In a research paper on training in social care, Lindsey Pike and others point out:
"Individuals on their own cannot make training effective; they need to work within systems that promote the transfer of their learning to practice through effective workforce development structures."
In the case of Wayne and Graham, what training they would have had just appeared to enable to them to cover their tracks more effectively.  It allowed them to know what discourses would mitigate their actions: what to write in incident reports, what to tell management.  They knew, perfectly well, what they were and weren’t allowed to do.  The Panorama footage was a fascinating study in the maintenance of double standards in appearance; the appearance of what they think a support worker “should” look like (no doubt gleaned from training and management speak), and the appearance of a figure of power and authority, inspiring fear in residents and other staff.

Accountability of the regulator

Training and documentation alone is not enough.  What is needed is mutual scrutiny of staff practices, and scrutiny from above, at every stage.  Opportunities for scrutiny by people equipped with the knowledge and confidence to challenge abusive and poor practice, and create a real pressure to improve.  Shortly after the Cornwall abuse scandal, the Healthcare Commission conducted a national audit of specialist services for people with learning disabilities.  They found serious abuses in another service, Sutton and Merton.  Everywhere else they found highly restrictive and institutional environments, and they called the report A Life Like No Other.  In a fascinating comment from the regulator, they complained about a lack of external scrutiny of these services, and recommended increased referrals to advocacy services.  A few years later in 2009 the CQC went back to a random sample of services; they found much the same.  Following the Panorama program, Minister for Social Care, Paul Burstow, today authorised a series of random unannounced inspections of services.  I can’t help but feel cynical about this; it feels like an exercise where we can reassure ourselves that no Cornwalls or Sutton and Merton’s are lurking, without addressing the underpinning issues causing these problems to recur every few years.  I don't think I'm the only person to wonder what will be different the third time around.

The services in Cornwall were not inspected at all, as the managers had not registered them.  Police felt that had they been registered, events might not have got as far as they did.  Notably, Winterbourne View was registered, it had been inspected within the last two years (see report).  Ian Biggs, the CQC regional director interviewed by Panorama, commented that it was difficult to pick up on warnings from talking to staff and residents, and reading documentation.  I wonder whether they spoke to residents in private, away from staff – I know many care inspectors do not, although it’s a practice the Mental Health Act Commissioners believe is very important.  I've even heard of care inspectors handing out surveys to care home management to give out to staff and residents, and collect back in again, offering ample opportunity to select the most pliant individuals and weed out critical remarks.  But even away from staff, many residents may have been unable to explain what was happening, or been too fearful of reprisals.  How can a regulatory system get around that?  Well, by speaking to staff in private perhaps.  Somewhere, among the Waynes and the Grahams there must have been someone with some kind of awareness that all was not right.  By ensuring staff are aware of the appropriate channels for expressing concerns, and then ensuring they act on them.  This requires that staff and services know and trust the inspectors, which in turn may depend on more human contact than a brief biennial inspection.

Of course, the frequency with which a service is inspected will increase the felt presence of the regulator, and the likelihood that sooner or later warning signs will not be picked up.  Places of detention can be like black holes for warning signs; if residents are detained, and visitors are not allowed in, if all channels of communication are blocked or controlled by staff – who is going to raise the alarm?  In my view, it is extremely concerning that the frequency of inspection has seriously declined over the last decade – and especially over the last year.  A recent FOI I put into the CQC showed that expenditure on care regulation in general has declined over the last five years, but beyond this, the proportion of CQC expenditure spent on inspections has itself declined.  In fact, regular inspections of places of detention is not just desirable, it is part of our treaty obligations under the UN Optional Protocol on the Convention Against Torture.  OPCAT recognises, at an international level, that preventive visitation is essential to ensure that people in places of detention like Winterbourne View are not subjected to inhuman and degrading treatment.

Regulation relies upon obtaining information and acting upon it.  In many ways the fact that shocked me most in the Panorama program was that a former nurse at Winterbourne View had alerted the CQC to the abuse there three times, and they had not acted.  In my view there can be absolutely no justification for this.  It is simply not enough to say that this was a ‘misjudgment’ on the part of the CQC.  I would like to see Paul Burstow call upon the CQC to conduct a full internal inquiry into how their supposed risk-responsive systems could have missed this.  I would like the results to be made public.  In my naivety I had believed that their new ‘responsive’ methodology would have investigated any allegations of abuse automatically, particularly for such vulnerable patients, leaving no room for 'judgment' (and hence 'misjudgment') at all.  I am disturbed to wonder how many other alerts they have ‘misjudged’ and not investigated as a matter of course.

Ordinarily in the fallout from these abuse scandals, the focus is on the individual staff members and the management of the organisation.  Some broadsheets note that the scandal was a symptom of regulatory failure, but few take this up further with any real enthusiasm (the Independent and Community Care being  exceptions).  Beyond public censure, what incentives does the CQC actually have to improve?  It’s pretty unlikely anyone could, or would, bring a successful civil action against them for failing to ensure their rights were protected.  You’d have a much greater chance of success going after the abusing organisations, and it would be much easier to show direct accountability.  My personal view is that the CQC’s failure to act on alerts from Winterbourne View staff is a major failure in its duty to uphold the Article 3 rights of residents; it is, in itself, a direct breach of their positive obligations under s6 Human Rights Act.  But who could hold them to account for this, and how?  I’m not sure, and I’m not sure how without some kind of pressure on them to improve their practices and increase inspections the overall situation of a crumbling regulatory system will improve.  And yet, ensuring that the regulator takes seriously its duty to uphold the rights of care service users, is the very keystone of the entire system.

Where was everybody else?

One last thing that bothered me, that Panorama didn’t go into, was where were all the other professionals?  Fighting Monsters raises this question as well.  People don’t just end up in places like Winterbourne View.  Someone referred them there, and someone was paying for it.  Undoubtedly everyone on that ward was deprived of their liberty, but were they detained under the provisions of the Mental Health Act, the Mental Capacity Act Deprivation of Liberty Safeguards, or just unlawfully detained?  It’s not a question that’s taken up, but from a legal perspective it’s very important.  If they were unlawfully detained, perhaps police should look at charges of false imprisonment for the management, and it should almost certainly be explored in any civil claims.  If they were detained under the DoLS, who wrote the assessment that detention was in their best interests?  Did they place conditions upon the detention, and ensure they were upheld?  Was this assessment lawful, or should families be looking at issuing proceedings for unlawful detention against those who commissioned the care? [Update 07/06/2011: Roger Hargreaves emailed Vern Pitt at Community Care with his view - which is that the likelihood is they should have been under the MHA, because of the 'primacy principle' that MHA must be used wherever possible. I had to double check, as I'd always been under the impression MHA detention required 'objections', but that was incorrect.  Paragraph 4.18 of the Mental Health Act Code of Practice suggests that DoLS should be used if a person isn't objecting, but Paragraph 4.19 says that if they would have objected, if able to do so, they should be treated as if they are objecting.  I can't imagine why anyone wouldn't object to being at Winterbourne View]

Towards the end of the program Mansell calls for locked wards like Winterbourne View to be closed down.  I don't disagree with him, but I would caution that much of the abuse in Cornwall occurred in supported living settings.  Often what distinguishes a  place of detention from true supported living is not its legal status, but the practices of staff.  This is why I have expressed concern that the courts are overly preoccupied with surface appearances of 'normality' in determining whether someone is deprived of their liberty, and that no deprivation of liberty safeguards are available in supported living.  My preference would be towards developing Article 5 so that it recognises the intrinsic vulnerability of people who are subject to high levels of supervision and control of staff, whatever the setting.

People who lack mental capacity to decide where to live, who are moved to new accommodation or detained under the DoLS, should be entitled to an Independent Mental Capacity Advocate (IMCA).  People detained under the Mental Health Act have rights to Independent Mental Health Advocates (IMHA’s).  Were these referrals made?  And if they were, were advocates aware of conditions on the ward?  In many ways advocates might have been better placed than inspectors to develop longer term relationships with patients, to gain their trust, and hear what was happening.  Unlike commissioning bodies (and arguably the regulator), independent advocates have no vested interest in painting a rosier picture of ward life than might have been the case.  They aren’t a failsafe guarantee against abuse, but certainly I would have thought they would be better placed than many to identify it and raise the alert.  And where were the social workers, and Clinical Psychologists, and psychiatrists, who we must assume were having some kind of contact with patients?  Were they really oblivious to what was happening?  I can believe quite easily that professionals had very limited contact time with patients and were unable to pick up signs, but I suppose I can’t help but feel that somehow somebody, somewhere, should have noticed something was amiss.  It rather undermines the claims of the mental health professions if doctors and psychologists cannot pick up on behaviour that is indicative of being abused.

And what about family and community? Visiting family shouldn't have been kept at bay in visiting areas, what justification is there for preventing them from seeing the place where their loved ones are living?  Many families in the Panorama program spoke of a sense of exclusion from their children's care plans.  There is something that sounds romantic and old-fashioned about emphasising the importance of involvement with family in care provision, of keeping people in places where they have connections and roots.  Yet isolation from family and distance from home communities are common ingredients of abuse of all kinds - institutional, or cases like that of Steven Hoskin.  60% of people with learning disabilities are placed 'out of area' due to a shortage of services, how can family and communities be expected to look out for them in these circumstances.  Someone once commented to me that there's something very frightening about being in a situation where your only human contacts are with people who are paid to spend time with you, and you've got no real friends watching your back.

Even an adequate regulatory structure, even advocates and detention safeguards and whistleblowing procedures that were effective and protected staff from retribution, we would only be likely to curb some of the more horrific incidents.  It would not, of itself, have remedied the overwhelming sense of boredom, hopelessness and futility of ward life.  I have no hesitation in agreeing with the filmmakers that this was a major contributory factor to both the distress and ‘challenging behaviour’ of residents, and the terror inflicted upon them by staff.  Monsters are made, not born, and whilst I don’t want to mitigate what the staff did, their behaviour was in many ways congruent with a overarching and desolate ethos of care.  Of warehousing, of containment, of people reduce to ‘bare life’.  Care expert Jim Mansell recoiled in horror from the film, commenting that the staff had failed to regard the residents as people, as human beings like themselves.  Their acts arose from a failure of recognition.  Is this so very surprising, in the context of a care system that places little value on the very qualities that make us human: friends and family relationships; meaningful work; inclusion in the community; civic engagement?  To staff, they were just beasts to be kept alive and contained.

More reading
All the major newspapers have produced coverage of the program; for some it was their headline item. The Guardian, also a commentary by Keith Smith
Community Care also has some excellent in-depth coverage, including discussion of the regulatory structure, a guide to whistleblowing, and a blog piece expressing concerns that there may be other situations like it.  And if you haven't read it already, blogging social worker at Fighting Monsters gives her view here.  And Connor Kinsella writes an interesting commentary here.  I also read a great post on the topic, asking many pertinent questions, by blogger Scottish Mum, here.

You can read the CQC's response to the program here.  The BBC has an article written by Panorama's undercover reported, describing his discomfort in watching the abuse.  I have to say, whilst I recognise the importance of the footage in asking serious questions about the care system and providing police with adequate evidence for prosecutions, I do feel uncomfortable thinking about what he stood and witnessed without intervention.

UPDATE (01/06/11): Paul Burstow has announced an investigation into the CQC and the local council, South Gloucestershire, and their actions in this affair.  I was interested to note that the CQC's extended press release gives  more detailed chronology: they were alerted to concerns by a member of staff in December, but had already been contacted by the local authority themselves in November.  They local authority were the 'lead safeguarding' team, but it took until February to set up a meeting.  The CQC did not contact the whistleblowing staff member to find out about the concerns in more detail, but acknowledge that had they done they would have followed up with an inspection of the hospital.

ANOTHER UPDATE (02/06/11): The government has announced that the Department of Health will not, after all, be conducting or commissioning an independent investigation into failings by the CQC and local authority; they will rely on the findings of internal investigations carried out by CQC themselves.  This decision has been criticised by Labour as a U-turn in 24 hours.  The National Care Association have written to the Minister for Social Care, Paul Burstow, asking for an inquiry into the wider role of the CQC beyond the issues as Winterbourne View.  Meanwhile Community Care have learned that the CQC may be taking enforcement action to close Winterbourne View within weeks.

19 comments:

  1. Fantastic, detailed post. I am glad you raised the issue of the DoLs as that was troubling me. Also, with a solicitor, I think there may be a case for damages regarding false imprisonment. I'm not entirely sure about this but I know it has been done when people have been held unlawfully under the MHA.
    I've nothing much to add in addition as I agree with every point. I just wish I could have said it as well!

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  2. Really interesting (and incredibly detailed as ever!) post. Thanks for taking the time to do this - it really helps build my understanding. Great work

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  3. Dear Lucy,
    delighted to read your article. I have yet to watch the Panorama programme which I shall do later. I am a carer and support worker in the North West of England and have been on and off for fifteen years. I have identified with a great deal of what you have written and will blog some of my own experiences later this week. There are not sufficient words in the english language to convey my extensive feelings on the mutual subject. It is my opinion that, whilst unscrupulous corporate practice responsible only to the shareholder and general profit AND the tardy, malignant approach of local authorities acting as deaf dumb and blind mandarins to genuine social need has a significant part to play in the Dickensian scandal that is Health and Health and Social Care in England, ULTIMATELTY, the greatest share of blame and responsibility lies with the Regulator answerable only to the Government at hand. This culture of attrition is inherent and at the core of high-level management, from the corridors of Whitehall downwards. It is about cost, convenience, cover-ups and the large-scale bastardisation of healthcare at its most basic, fundimental and commonplace: it is about a culture of the select that have the means to secure not only ideal choice in lifestyle but also the means to provide support and security through to end-of-life but would rather spend that resource on wars for oil, bank bail-outs and caveats like "Trident": and it is also about a society which - apparently - prefers to put store in wages for sportsmen and entertainers that would have shamed king Midas whilst looking the other way because "...well its somebody else's job that innit?". The "somebody else" in question no longer seems to give a damn about our parents and children. I for one have had enough.
    I have challenged the regulator, cSCCI, CQC, private care companies and the local authority several times in the last decade on their "approach" to standards, regulation, safeguarding, commissioning, responsibility and reason with very little success or truthful realism from protagonists. Some people would not believe the things I have reported never mind seen. From the little I have heard about the Panorama programme and in light of the revelations about last month, I feel that my pot is about to boil. Thankyou for writing such an enlightening and well focused piece because it has to some extent inspired me to continue to uphold good practice and continue to put pressure upon those elected to care for and safeguard the most vulnerable members of our society, who all to often do nothing of the kind. Yours most sincerely, Rachelle Mizzy.

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  4. Thanks v much for your comments DougalDoug, CB and Rachel. I have to say, as we've been discussing on Twitter, when these events come around again and again, and we repeat the Serious Case Reviews and national audits and investigations, which find we didn't implement the lessons from last time... it's hard not to feel that from very high up cost and convenience are of greater importance than ensuring people's rights are protected. We must ensure the pressure on those conducting reviews, and with the power to implement recommendations, is kept up.

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  5. Thank you for sending your article. I will put yours onto my post as well. So little being done to help people who cannot help themselves. You have obviously been in the system for far longer than I have, and know much much more. For me, a lot of my opinons and feelings about it are emotional as it is a subject that may indeed touch the life of me and mine in my life in future.

    It is, horrific to watch, and for parents like me, scars our relationships with all the organisations that are meant to help support us. I don't know how we recover from that.

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  6. Thanks Scottish Mum. I agree that one of awful side effects of situations like this is what it does to the relationships between family carers and professionals of all kinds. Families need to be able to trust health and social care professionals, and the thought this happened on their watch is very, very frightening. There are some really, really excellent people working in social care, as I'm sure you know, but just knowing that isn't always enough to restore trust. I'm not sure what the solution is, but I do think that ensuring carers are involved in all stages of care planning can help. That includes at the point of delivery - the provider themselves. I think one of the most telling things about Winterbourne View is that parents were clearly excluded from all the day to day aspects of their children's lives. That's a very old fashioned 'hospital' attitude, and I hope that care homes and supported living wouldn't do that to the same extent. But it should ring alarm bells if they do.

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  7. A fantastic, deep and knowledgeable post – thanks Lucy.
    There are 4 things that ring very true for me from this horrific situation. You have talked about some of these, and in a clearer way than I could, but the 4 things for me are these –
    - 4 staff from this place are going before the courts in connection with this situation. This is ridiculous. Is it time for the disabled peoples’ movement to adapt Trevor Phillips’ notion of ‘Institutional Racism’? This case clearly demonstrates the existence of ‘Institutional Disablism’. To single out 4 people, who obviously reported to their managers, and who were going along with what their organisation (staff, policies, procedures and practices…) decided was ‘acceptable’, is risible. The entire organisation needs root and branch reform, with senior management being held accountable for the activity of their staff. Where does the buck stop?
    - The CQC has had its budget massively cut, thanks to this new gov. This means the number of inspections it is able to conduct per annum has reduced by at least 2 thirds. This has dire implications in relation to residential places such as Winterbourne, and it may well be possible to extend these implications across the board for all client groups. Let’s hope not, however (though another recent report into hospital care for older people, who are left without food/water for days at a time, fits into the notion of ‘Institutional Disablism’ and the need for more CQC, not less, in these times of tough budget cuts)
    - The notion that the state knows best is clearly up for debate. It seems to me that the state knows nothing of the kind in relation to groups of ‘vulnerable’ people. As the vulnerability of the individual increases (however this is measured, and I would strongly dispute the notion that disabled people are necessarily labelled as ‘vulnerable) the state’s falling on its face and failing in its core duty of care becomes ever more apparent. Here in Cornwall the state has fallen down over the past 4 years in relation to people with learning difficulties (Steven Hosking kicked off a bridge by his ‘friends’), older people (several ‘care’ homes have been held up for their poor practice), and vulnerable children (in relation to many cases of abuse and continuing OFSTED failures for children’s services). The more that state services can be opened up to appropriate voluntary sector organisations – including Disabled Peoples’ Organisations – the better these services will become;
    - The ‘closed’ nature of statutory sector provision – whether it is provided ‘in house’ or by private companies as is the case with Winterbourne means that all sorts of bad practice goes on behind closed doors. The idea that Winterbourne/Budcock might be replicated across the country is terrifying.

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  8. Thanks TO for your comments. I agree that voluntary sector organisations can offer excellent services that can compliment the work of local authorities.

    Winterbourne View had me thinking about a passage from a recent deprivation of liberty judgment: A Local Authority v A (A Child)& Anor [2010] EWHC 978 (Fam).

    "We have to be conscious of the limited ability of public authorities to improve on nature. We need to be careful not to embark upon 'social engineering'. And we should not lightly interfere with family life. If the State... is to say that it is the more appropriate person to look after a mentally incapacitated adult than her own partner or family, it assumes, as it seems to me, the burden... of establishing that this is indeed so. And common sense surely indicates that the longer a vulnerable adult's partner, family or carer have looked after her without the State having perceived the need for its intervention, the more carefully must any proposals for intervention be scrutinised and the more cautious the court should be before accepting too readily the assertion that the State can do better than the partner, family or carer... At the end of the day, the simple point, surely, is this: the quality of public care must be at least as good as that from which the child or vulnerable adult has been rescued. Indeed that sets the requirement too low. If the State is to justify removing children from their parents or vulnerable adults from their relatives, partners, friends or carers it can only be on the basis that the State is going to provide a better quality of care than that which they have hitherto been receiving"

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  9. Thank you Lucy for your always helpful and informative blog. My husband and I have run a small care home registered for five adults with learning disabilities within our own home for the last 22 years. Apart from our own disgust at what the Panorama programme brought to light, we both feel the trust we have built up with families could easily be damaged. Families find it so hard to accept much needed help because they fear the very things we have seen in this programme, but I would just say that all the carers I have been speaking to over the last few days have cried along with those parents when watching this. I would also like to ask what the huge fees of £3500 per week were meant to cover as there appeared to be nothing happening for these poor people. We are paid a 10th of that fee and yet our residents lead incredibly active lives. There are a lot of questions still to be answered.

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  10. Thanks for your comment. I probably should have added, as CB at Fighting Monsters was careful to do on her blog, that the vast majority of care homes are nothing like this. In fact, in the 10 years I worked in care I only came across one service approaching anything like this - and many services were very, very good. Care on the model you describe, in the family home, has come out particularly highly rated in CQC reports and other investigations.

    And you're right also I think to question the fee. Watching that program, many service users struck me as people who could have been supported much more cheaply, in much less restrictive settings. Obviously I haven't seen their needs assessment, but £3k a week sounded like a huge amount to pay for people to sit in a chair all day.

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  11. Superb article, thoughtful and well-informed. I'm a parent/carer of my 16 yr old son with DS, but also spent 25 years working in planning and service development, helping to close the old asylums and create tranformational new services, working with Prof Jim Mansell and many others. It wasn't an easy task, defensive organisational behaviours and beaurocratic obstacles were a constant challenge.
    I can't help but compare my reward for caring: £55 a week Carers Allowance, with my former salary. And if I earn £100 a week, I even lose that miserly pittance! Many families would wish to continue caring - directly or indirectly through acting as care managers - for their severely disabled children until they drop, but the present social security rules preclude families from being paid for their work and tear families apart through enforced poverty.

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  12. Thanks for your comment Baiterboy. It's really clear from your comment and that of other carers here and by email that any full analysis of what happened in Winterbourne View needs to look at the wider picture of support for families in the community. Because carers are so poorly supported (financially, practically, emotionally), people are more likely to end up with emergency referrals to places like WV. But institutional abuse scandals reduce carers' trust in statutory services, and so they are less able to seek help and support when they need it.

    In Luke Clements' work, he comments that it's not just the individual who is 'disabled' it is their network of care and support as well. If that view were taken at a policy level, we would see carers getting real support (not tokenistic acts of parliament that rarely translate to actual provision of services) to have a full life outside of caring responsibilities - jobs, education, leisure. I would also like to see carer's allowance, like DLA, non-means tested. And, obviously, increased.

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  13. I hope the implications of this is far reaching for everyone in the networks of care.

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  14. I really appreciate the effort that must have gone into this comprehensive and thoughtful blog post and the comments other readers have made on it. I have not watched the Panorama programme because I read the newspaper reports of the programme and was absolutely sickened. I couldn’t bear to watch it. With this caveat in mind I have a couple of comments which I will post in two go's.
    REGULATION AND MONITORING: Lucy (and others elsewhere) have asked where the social workers and other care/health professionals were. I used to work for a local authority as a reviewing officer (social worker) responsible for monitoring the well-being of service users in long-term placements, mostly out-of-area. Lucy is right to say that visiting professionals should have been able to pick up signs. But they will only have been able to do this if they already had extensive personal knowledge of the service user and – this is key – the service user’s family. This can only be built up through frequent and extensive contact, and contact which takes place outside of the placement environment. As others have already commented, people with learning disabilities are liable to be discredited and families are often afraid of rocking the boat. A reviewing officer/social worker needs to be able to act as an informal sounding board for families – someone they can convey concerns to at a very preliminary stage. Simone’s parents should have had the kind of relationship with their daughter’s social worker or reviewing officer which allowed them to let their concerns casually slip in the course of a weekly catch-up phone call. The worker could then have explained to Simone’s parents that this was something important to look in to and provided information and reassurance about the investigation process. The reality is that very few local authorities allocate resources to enable workers to build these kinds of relationships with service users and families (I was lucky enough to work for one which did). Most people with learning disabilities who are already placed do not have allocated social workers. Instead they are visited by whoever is the ‘duty worker’ when they have to be visited. This kind of system offers little to supplement the degraded system of inspection which is all CQC can now offer (and Lucy is absolutely right to highlight how the care inspectorate has been run down by successive Governments). My heart sank when I heard that the sum total of the Government/CQC response to this was going to be a series of unannounced inspections. Does CQC honestly think it’s going to walk through the door and catch people perpetrating the kind of abuse seen in the Panorama programme? What I suspect will happen is that a considerable amount of poor practice will be discovered. There will be numerous multidisciplinary meetings which will culminate in care homes companies sacrificing the usual scapegoats (typically the support worker most directly implicated and the lowest rung of management possible). The poor practice will then continue under new but similarly unsupported and thoughtless management.

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  15. Here is my second comment as per my previous one:
    INDIVIDUALISED CARE ARRANGEMENTS: I would also like to say something about service design. In the best group care settings I know, support workers offer service users loving care but they are nonetheless often very preoccupied with dividing up that loving care equally between service users. It seems that the larger the number of service users the more diluted – or at least fragmented - the loving care they get is. In individualised arrangements (where a person is supported by their own staff team) the inverse can be true; service users can experience a concentration of loving care. Local authorities now have the experience and knowledge to create individualised arrangements even for individuals with extremely risky behaviours. The problem is that these arrangements are extremely time-consuming to set up (once set up they cost no more than the Winterbourne View-type placement). A few local authorities have robust respite care services which can support distressed or ill individuals whilst alternative in-area arrangements are being put in place but many don’t. And virtually no local authorities have robust in-house domiciliary care services anymore which could sustain someone in their own home during a period of acute distress or illness. Jim Mansell is absolutely correct that people with learning disabilities should not be going out of area and the Winterbourne View-type hospitals should be closed. But for this to happen local authorities and/or their health service partners need a rapid response capability similar or even more extensive than the assertive outreach services provided for (non-learning disabled) mental health service users.

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  16. Thanks very much for your comments Heddwch. Sadly I suspect that the government's response to WV, if they have one at all, will be to focus on the regulatory and safeguarding structures. Your comment highlights that working practices in social care today make it very hard for family carers to build up relationships of trust with social workers. I suspect in the case of WV that many family carers did not desire or seek out placement in a hospital environment; I can see how social workers and family carers alike could come to regard each other with suspicion in such cases. It's hard to know how to regulate or legislate for vital things like trust... but I suspect ensuring social workers have enough time to build up relationships, and are not forced to make placements that alienate families because there aren't any in-area services, would be a good start.

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  17. Thanks for very comprehensive analysis around this issue. Hope you don't mind but I've added a link in my own blog to your site.

    My own biggest worry is with CQC. from our own experiences with our sons care, they seem to have lost the plot entirely. Although we have confidence in his care providers, we have little confidence in them as a watchdog - this case bears this out and the decision to not investigate them independently is very worrying. Their main concern seems to be completed paperwork and checklisting - their new registration system has caused a sizeable gap in my sons care and they seem indifferent to this outcome. The increased reliance on 'self assessment' seems a recipe for disaster.

    It does seem a little inevitable when the Chief Executive is appointed from an authority itself under investigation for neglect. As family, the message is very clear - we are the watchdogs now, god help those without families or advocates.

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  18. Hi Ned - I don't mind you linking at all! I've been following your blog for some time; it gives a really good (if sad and frustrating at times) description of caring for someone within an often unreliable social care system.

    There are, obviously, many things that went wrong with Winterbourne View - quite possibly the actions of commissioning bodies, local safeguarding teams, as well as the provider. But the CQC used to be regulator for all of those. They no longer carry out assessments of councils, and they don't respond to complaints about services. It's all very well saying "providers are responsible for managing complaints", but what happens in serious situations like this when they don't respond to concerns raised by their own staff?

    To be honest, I'm not really sure what the point of a regulator IS, if it doesn't take action on serious concerns, and continues to display information to the public that gives the impression of a good service - despite having information to the contrary in their possession.

    It's true that families could have gone to the local government ombudsman, but I don't think staff can (can they?). And the LGO doesn't have the power to shut down or inspect a service. I'm not sure if you saw this article:

    http://www.guardian.co.uk/society/2011/jun/07/disability-abuse-winterbourne-view-care-regulator-review

    This bit might be of interest:

    'Asked to explain the difference between a complaint and whistleblowing, which the CQC says it does take up, Williams struggles. She accepts there may be a need to look again at the distinction and how it is explained to the public and media.'

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  19. It's not an 'explanation to the public' CQC needs to carry out, it's the will to actively inspect and use the legal teeth it already has. The number of actual closures it's enforced is derisory. What it does seem good at is generating administrative box ticking 'hoops' that care providers have to jump through. Our own service provider has tried to be up front and comply with all the (uninspected) requirements and it's resulted in a paperwork decision that it has to cease providing a service it was doing capably and well (and was rated excellent for by CSCI) because CQC (based on no visit or direct contact) has said it is no longer registered for.

    This feels like obstructionism on top of its inspection failures.

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