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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

The Small Places has moved...

The Small Places has moved to a new home here, including all the old posts. Any posts after 6th March 2014 will appear on the new website, but old posts are preserved here so that URLs linking here continue to work. Please check out the new site.
Showing posts with label learning disability. Show all posts
Showing posts with label learning disability. Show all posts

Tuesday, 12 July 2011

R (NM) v Secretary of State for Justice [2011]

Thanks to Adam Wagner's Twitter feed I noticed a recent ruling relating to whether a prison acted lawfully when it decided not to investigate allegations of sexual assault on a prisoner with learning difficulties. The case, R (NM) v Secretary of State for Justice [2011] EWHC 1816 concerned whether the prison authorities were in breach of theDisability Discrimination Act 1995 and the Equality Act 2010 because they failed to make reasonable adjustments in relation to the investigation of a sexual assault against a prisoner with learning disabilities, NM. It was further considered whether the failure to conduct a formal investigation was in breach of NM's Article 3 rights. The claimant was assisted in bringing his case by the Howard League for Penal Reform. The court found in relation to all points that the defendant had acted lawfully.

I don't want to go into masses of detail about the case, but I did want to flag up a few things about the judgment that might merit further thought for disability rights campaigners.

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.

Sunday, 6 February 2011

Incapacity, Sexuality, Law



A Court of Protection case about a man with learning disabilities who was banned from having sex has recently been in the news.  The case was reported in the The Daily Mail and The Telegraph, and Libertarian blogger Anna Raccoon, wrote about the case in a posting entitled ‘Too stupid for sex?’  Crown Office Row barrister Adam Wagner wrote a nice summary of the case in the UK Human Rights Blog, and the judgment itself can be found here.


In brief, the case concerned whether a man with learning disabilities, ‘Alan’, who lived in local authority accommodation should be banned from having sexual relations because he lacked the mental capacity to consent to them.  The judge reviewed existing case law on both the capacity to consent to marriage and the sex, and concluded that the law required a person to be able to understand three things in order to be able to consent to sex:
    • The mechanics of the act
    • That there are health risks involved, particularly the acquisition of sexually transmitted and sexually transmissible infections
    • That sex between a man and a woman may result in the woman becoming pregnant
The judge found that Alan lacked understanding of these matters, and directed that a ban on him having sex should be upheld in the short term, but that he should be provided with an education on these issues in order that he might attain the capacity and be able to resume sexual relations in the future.  In general the consensus on this case appears to be that it was a sensible decision, but there are aspects of the case I find deeply unsettling, which I will discuss here.

The judge in this case followed reasoning laid down by Judge Munby concerning whether the capacity to consent to sexual relations or marriage is ‘general’ or ‘partner-specific’.  In Sheffield City Council v E (2004), it was found that the capacity to consent to marriage was determined by whether or not the person understood the contract of marriage in general– rather than the implications of the specific relationship.  The case concerned whether E, a woman with learning disabilities, had the capacity to consent to marry S, a man with a history of domestic violence and a conviction for buggery of a minor.  It was held that as long as she understood the ‘simple’ contract of marriage, then she had the capacity to consent to marriage with any partner, no matter what his background.  In another case, Judge Munby argues the same way for the capacity to consent to sexual relations: ‘It is difficult to see how it can sensibly be said that she has capacity to consent to a particular sexual act with Y whilst at the same time lacking capacity to consent to precisely the same sexual act with Z.’  Serious concerns with this line of reasoning have been raised by academic commentators  - there is an excellent discussion of the judgment in Sheffield City Council v E in the recently published book Feminist Judgments.  Supreme Court Judge Baroness Hale also remarked on difficulties with this line of reasoning in another case, R v C (2009), in which she said ‘My Lords, it is difficult to think of an activity which is more person and situation specific than sexual relations. One does not consent to sex in general. One consents to this act of sex with this person at this time and in this place.’ [27]

Judge Mostyn- in the present case dismissed Baroness Hale’s remarks as ‘conflating the capacity to consent to sex with the exercise of capacity to consent to sex.’ [34]  In relation to this specific case, I think it is possible Judge Mostyn is correct.  Where I depart from agreement with him is in his analysis of what understanding is required to be able to consent to sex.  Specifically, although he believes it is important to have an understanding of the ‘mechanics of the act’ and the risk of pregnancy or infection, he dismisses the importance of understanding either the emotional repercussions [37] or the need to understand that sex should be between consenting adults [39].  I will take the latter point first.  Judge Mostyn argues because rapists and paedophiles have the capacity to consent to sex, even though they believe it is morally acceptable for it to be non-consensual or with children, an understanding of consent cannot be an essential ingredient in the capacity to consent to sex.  This seems to me to be a faulted analysis of the situation.  Surely the point about rapists and paedophiles is that they understand but disregard, the legal requirement for sex to be between mutually consenting adults.  If it is held that a person can have the capacity to consent to sex without any understanding that it should be consensual, there seems to me to be a risk that people like Alan could be held responsible for entering into non-consensual sex where they had no understanding of consent itself.  The consequences could be that one party is held liable for rape, where they did not understand the other party had a right to refuse sex, or, conversely, that one party is held to have engaged in consensual sexual relations merely because they did not understand they had the right to refuse them.

This is not merely a matter of social engineering, of ‘teaching what is right and wrong’ [41]; it seems to me that a vital ingredient in having the capacity to exercise consent in any matter is that one must understand the nature of consent itself.  One can hardly be expected to exercise a right to refuse unwanted interferences if one does not understand that one can.  It would be absurd, by comparison, to hold that a person could be said to have consented to a marriage where they believed they had no choice in the matter.
The second subject I want to comment on in relation to this case is a wider social issue, relating to how Alan managed to attain the age of 41 without any of the basic understanding around sex the judge feels is necessary to exercise the capacity to consent to it.  This case is in many ways a fantastic example of how mental capacity is not only related to physiology, but also to a person’s life experiences and current situation.  In my experience of working with adults with learning disabilities, Alan’s situation is by no means unusual.  I have lost track of the number of people I have worked with who are well into adulthood and have no understanding of what sex involves or what its consequences might be.  Yet, these same people display behaviours which clearly show they have a sexual libido, or – particularly for many women I have worked with - that they would like to have a baby.  How have we, as a society, allowed people to enter into adulthood with the physical and emotional longings for intimacy, sexual relations and procreation but so poorly equipped to understand or safely exercise those feelings?  We would not dream of sending our non-disabled children into the world with such dangerous gaps in their knowledge, so why is this happening to people like Alan?

If we look back across the history of adults with learning disabilities in the last century, we can see on ongoing concern with their sexuality.  In the early twentieth century, as is relatively well known, there was a movement to sterilise ‘mentally deficient’ adults – spearheaded in Britain by the Eugenics Society.  In Britain (although not elsewhere), this movement was successfully opposed by an unlikely coalition of Catholics and Libertarians – including the author G K Chesterton.  Public debate over eugenic sterilisation reached a peak over the 1913 Mental Deficiency Bill, where the government eventually removed a clause requiring eugenic sterilisation of ‘mental defectives’ and instead established ‘colonies’ for their separation and sexual segregation.  The defeat of eugenic sterilisation has been widely hailed as a triumph of liberalism over fascistic leanings, a triumph that I would not want to deny.  But, as is raised in this case, I think there is a fundamental question over whether the containment and sexual segregation of people with learning disabilities can be hailed as a ‘humane’ or progressive alternative.  I do not advocate a return to systematic sterilisation of people with learning disabilities, far from it, but the spectre of eugenic sterilisation has long clouded debate over the measures that were implemented in its stead.

It is out of this background of the desexualisation of people with learning disabilities, I believe, that people like Alan are attaining majority age with no knowledge or vocabulary to describe their sexual feelings.  Based on my experiences working with children and adults with learning disabilities, I think there are two dominant background beliefs which continue to give rise to this situation.  The first is that by providing people with learning disabilities with education on sex, they will be more inclined to desire it, and that it turn would give rise to uncomfortable consequences.  If my experiences and the cases like these are anything to go by, a lack of sex education does not lead to an absence of sex drive.  It leads to a dangerous lack of sexual awareness, which may lead to inappropriate behaviours such as those demonstrated by Alan, or the considerable danger of unprotected or unwanted sexual encounters.  Failure to provide an adequate education on not only the mechanics of sex, but also the social and legal issues that attend to it, are a major factor in why adults such as Alan can be said to lack the capacity to consent to sex in the first place.

The second background belief which I believe informs the lack of sex education given to people with learning disabilities, is that they will not need it in any case because they will always be prevented from having sexual encounters.  This has deep roots in the ‘containment’ and ‘management’ solution to adult sexuality found during the eugenics debates of the early twentieth century.  It speaks directly to a question of deprivation of liberty that was, in my view, rather brushed over by the court in this case.  It is hard to see how the degree of control that must be exercised in order to prevent someone having sexual relations can be anything but a deprivation of liberty.  This is one key difference between the issues surrounding sex and marriage.  Whilst a marriage could be annulled where one party lacked the capacity to consent to it, a sexual act cannot be undone – thus, it must be prevented.

It is a peculiarity of these cases that they concern the concept of consent, which arises from a tradition of negative liberty and the prevention of unwarranted interferences with one’s autonomy and one’s person.  Although Adam Wagner sees this case as relating to issues of public safety, it seems to me that the court is primarily addressing the question of whether Alan should be permitted to resume his relationship with his housemate Kieron, not whether he should be permitted to molest and rape the public at large.  Thus, they are concerned with whether permitting Alan to have sex with Kieron infringes his bodily integrity, because he cannot be said to have consented to it.  It seems to me ironic that in an attempt to protect Alan’s bodily integrity and autonomy in such a private matter, his sex life is brought before a public court, to be reported in the national press.  He is subjected to a range of deeply personal assessments by medical professionals; interestingly, there is no discussion as to whether he consented to these.  He is physically prevented from resuming his sexual relationship to the extent that he is deprived of his liberty; one can only assume that at points this included physical restraint.  I do not question the legality of the path which led to this state of affairs.  If Alan lacks the mental capacity to consent to sex, then any penetrative sex he engages in will be statutory rape – as for a child, and those who care for him cannot therefore permit it.  I wish however to point to the considerable irony that in seeking to avoid this ‘violation’ – which Alan himself desires – the authorities are forced to exercise further violations upon his bodily integrity, autonomy and privacy.

I wanted to end this piece with a consideration of the extreme difficulties faced by those charged with the care of adults who lack mental capacity in supporting, or otherwise, their sexual needs.  There is beginning to be a change in attitudes towards sex education and supporting the emerging sexuality of adults with learning disabilities, but the issues are extremely complex.  One great concern is whether people with learning disabilities should be supported to have families.  In a school for children with learning disabilities that I once worked in, there was a poster on the wall which read “People with learning disabilities can do anything, including having a family” – it had a picture of two stick figures under a rainbow, holding hands, with a baby.

I thought of this poster often, years later, when I worked in a unit which provided residential assessments of families subject to child protection proceedings in the courts.  I worked largely with families where one parent or the other had learning disabilities.  Their situation was a million miles from that rainbow drawing.  In most of the cases I saw, although – importantly - not all, even the most intensive teaching did not instil the skills needed to provide ‘good enough’ parenting.  One particularly common problem was that whilst parents could demonstrate learning when called upon, this learning was not reliably implemented where parents were distractible.  Interventions to prevent boiling formula milk being given to babies, to prevent overdoses of medicine, babies left unattended in the bath were not unheard of – and whilst some parents learned to avoid these situations, not all did.  Some of the most agonising cases also concerned domestic violence by fathers who often did not have learning disabilities.  In such situations, the mother was often left with the unbearable choice of staying with her abusive partner, who was able to provide the support and planning needed to demonstrate ‘good enough’ parenting, or to fail to demonstrate that she could do this alone and thus lose her child.  I cannot begin to imagine the pain these families went through, but I can recount that these were the most distressing and difficult moments of my working life.  There were families that came back several times over the years to replay this nightmare scenario, often – but not always, with the same results.  It occurred to me on several occasions that if these parents lived within more supportive communities, or had more support from families (most were themselves brought up in care) or the state, they might have been able to safely parent.  But people with learning disabilities are, as yet, a very significant distance from such an ideal situation.

Whilst systematic sterilisation is undoubtedly morally repugnant, and prevention of sexual encounters altogether may result in significant violations of bodily integrity and indeed dignity, it is simply not possible to hold up our hands and say that we should abstain from involvement altogether.  I concur with Judge Mostyn and Lord Justice Munby that we should be cautious about setting the bar for capacity to consent to sex too high, such that people – for instance – with learning disabilities could not enjoy sexual relations and are subject to major infringements of their liberty to avoid them.  The structure of the Mental Capacity Act regarding sex means that we cannot take a person’s ‘best interests’ into account.  This is because consideration of ‘best interests’ only comes into play once someone is said to lack the mental capacity to take a decision for themselves; the decision to consent to sex can never be taken on behalf of another person.  This seems both wise and prudent.  However, I would caution against a measure of capacity that viewed sex as a mere mechanical act with attendant ‘biological’ risks.  Surely an understanding of the risks of possible infection or pregnancy requires a comprehension that these will have major practical and emotional sequellae, sometimes life changing.  I do not envy the decisions that must be made by those who care for Adam; but I hope those providing him with sex education take some trouble to ensure he understands more than the minimal criteria set out by the court.


[Edit: I've just found a fantastically interesting, useful and free article by Peter Bartlett, from Nottingham University, on issues relating to dementia and sex in care homes.  This particularly focuses on the Sexual Offences Act 2003, and it well worth a read.]