4th Evidence Session of the Committee on the Mental Capacity Act

Somewhat belatedly, here is a digest of the fourth evidence session of the House of Lords Select Committee on the Mental Capacity Act.  I have put all my posts about the background to the Committee, and the previous evidence sessions, under this label if you want to read more.  On Tuesday 16th July the Committee heard evidence from disability charities (transcript here), including:

• Vanda Ridley, Communications Manager at the Down’s Syndrome Association;
• Beverley Dawkins OBE, National Officer for Profound and Multiple Learning Disabilities at Mencap;
• Hannah Barnett, Head of Operations at the National Autistic Society;
• George McNamara, Head of Policy and Public Affairs at the Alzheimer’s Society;
• Peter McCabe, Chief Executive of Headway;
• Paul Farmer, Chief Executive Officer of Mind.

This session was chaired by Baroness Browning as Lord Hardie was unable to attend.  As usual, here are some comments from the session organised by topic...

Care refusal - a public law puzzle

Imagine a situation arises that a person, let’s call him Albert, has growing care needs, and the local authority (having assessed those needs) feels that the only way that all his eligible community care needs can be met is through a placement in a residential care home. There are variations on this situation. It might in theory be possible to support Albert through increasing his home care visits, through overnight support, but this would exceed the resources the local authority is willing to spend on Albert’s care, given that they can (in the authority’s view) be met by the (cheaper) care home placement. There are other variants – a person might be currently in the care home and wanting to return home. A young adult moving out of the family home might want to move into supported living (with their own tenancy) rather than a care home. All have in common two theoretical alternatives: a care home placement which meets all of a person's assessed eligible needs, and living in their own home with some unmet eligible needs.  Now supposing Albert does not want to live in a care home, he wants to live in his own home. What happens next?

Thought provoking papers on capacity

I came across two fascinating papers this week that I thought I'd share, both of which have interesting implications for that slippery concept we call "mental capacity".  The first was a case report by a medical team who had 'established capacity'* in a patient with partial locked in syndrome (Carrington, S. & Birns, J. (2012) 'Establishing capacity in a patient with incomplete locked-in syndrome', Progress in Neurology and Psychiatry 16(6) p 18-20 - happily the paper is FREE!).  This is one of the first papers I've seen on the communication aspect of mental capacity.  As Tom O'Shea and I were pondering on Twitter, I wonder if this test would have come out differently if the man had been making decisions which his treating team disagreed with.  The paper is also of interest in connection with advance decisions, because whereas before his stroke the man had indicated he would not have wanted to live with partial locked-in syndrome, following his stroke he not only wanted life-sustaining treatment, but he wanted to be resuscitated in the event of cardiac failure.  A lot of the debates surrounding Tony Nicklinson's request for assisted suicide assumed that nobody would want to live in his shoes (yes Polly Toynbee, I am talking about your particularly offensive article), yet a survey conducted last year actually found that a majority of people with locked in syndrome were happy and only a minority wanted to end their lives.  The point (for me) about Nicklinson was about his autonomy to do something non-disabled people would be able to do independently.  We should approach with extreme caution the assumptions people who haven't experienced a condition first hand make about quality of life.  This, of course, has a bearing on the ongoing DNAR debates, but that's another post for another day.

What is mental capacity?

Today I’ve decided to just put up some notes I’ve been making on “mental capacity” as a legal concept.  They weren’t really written to be a blog post, but I don’t think there’s any harm in sharing them.  It’s not going to contain any great revelations, but I found it interesting to chart how the concept has unfolded from the time of the Law Commissions’ first reports on mental capacity (available under ‘M’ on Bailii).  I’m not a philosopher, but I do find some concepts from philosophy helpful to unpick the ways in which the concept has been used.  If this kind of “abstract” piece isn’t not your cup of tea, maybe come back later in the week for comment on the Neary ruling when it’s out.

Different tests of capacity

The Law Commission discussed different ‘mental capacity’ type concepts in other jurisdictions.  ‘Status’, or ‘category’, approaches make global (or near-global) attributions of decisional capacity on the basis of membership of a particular diagnostic category or legally defined group.  For instance, a status approach might say that anyone within a particular age bracket, or with a particular medical diagnosis, lacks capacity in all matters.   They also noted that the legal status of being a ‘patient’ of the Court of Protection (in its pre-MCA incarnation) effectively deprived them of all contractual capacity ‘whether or not as a matter of fact the patient actually had such capacity’ [3.3]. They rejected status approaches on the basis that they oversimplify the question of whether a person has decisional capacity and they ‘tend to undermine respect for individual rights’ [2.43].  Certain kinds of status approaches are explicitly precluded by s2(3) Mental Capacity Act 2005 (MCA).

Outcome based approaches attribute capacity on the basis of the outcome of a particular decision.  The Law Commission gave this pretty short shrift, saying:

‘A decision which is inconsistent with the views and values of the assessor, or rejects conventional wisdom is by definition incompetently made’

and

‘This penalises individuality and demands conformity at the expense of personal autonomy’ [3.4]. 

They reported, however, that many respondents felt that doctors were applying an ‘outcome’ approach, whereby a person was taken to lack capacity if they rejected a course of treatment which the doctor advised.  Section 1(4) MCA can be seen as a caution against ‘outcome’ based approaches.  I'll consider below whether the MCA formulation allows 'outcome based' approaches in by the back door.

In the event, the Law Commission proposed what they called a ‘functional’ approach, on the basis that it was the most strongly supported by respondents to their consultation, and had ‘the merit of being the approach adopted by most of the established tests in English law’ [3.5].  This ‘functional approach’ was combined with a diagnostic threshold, giving rise to what is referred to in the code of practice as the ‘two-stage test of capacity’ (p41). Unlike status or category approaches, a functional approach is ‘decision specific’ – a person’s mental capacity can only be determined by reference to their ability to make the decision in hand. 

The first stage of capacity assessment: Invoking a diagnostic threshold

Section 2(1) MCA states that a person lacks capacity if they are unable to make a decision ‘because of an impairment of, or a disturbance in the functioning of, the mind or brain.’  The Law Commission considered arguments for and against including a diagnostic threshold [3.10-3.14].  Arguments against included that it might encourage a purely ‘status’ approach to capacity, that it was stigmatising, and that a medical label was in any case superfluous to the legal and moral issues at stake.  The Law Commission felt that the second ‘functional’ stage of the test would discourage a status-only approach, meanwhile, they felt, not having a diagnostic threshold would ‘places too heavy a burden on the functional test... this test is not easy to define or to apply, particularly as to the degree of incapacity which is required’.  They regarded one benefit of the diagnostic threshold as increasing:

...the involvement of people with suitable specialist qualifications in the determination of whether intervention is necessary in an individual case, and what kind of intervention is most appropriate. [3.11]

The formulation quite deliberately reinforces the status of medical and health professional evidence in these matters.  The Law Commission felt a diagnostic test had a role to play ‘in ensuring that the test is stringent enough not to catch large numbers of people who make unusual or unwise decisions’ [3.8]; thus it is medical and health professionals who are charged in law with demarcating the boundaries of madness, non-pathological deviance and eccentricity.  There’s probably a lot that could be said about this decision from governmentality and critical psychiatry perspectives, but I won’t get into that here.  The diagnostic threshold has an influence on the way individuals are described in cases: almost always the first thing we learn about them is their diagnosis, and very often for people with learning disabilities that rather dubious concept – their mental age.  I always wonder how far 'mental age' as a construct has achieved such prominence in case law  because it seems to tacitly sanction paternalistic interventions that we would regard as acceptable in the lives of children, but generally not adults.

The second stage of capacity assessment: The ‘functional test’

The ‘functional test’ of capacity is set out in s3 MCA.  I noticed that in at least one of the Law Commission reports they refer to this as a ‘cognitive’ test.  I am glad they have dropped this terminology. I doubt many psychologists who use the term ‘cognitive’ would mean it in this way, and I share many of the reservations about ‘cognitive’ approaches to clinical psychology expressed by discursive psychologists.  Cognitive approaches can pay insufficient attention to someone's embodied and social context, and offer false claims of neutrality regarding the cultural and political content of the issue under discussion.  By contrast, discursive psychologists acknowledge the 'constructed' nature of psychological concepts, and emphasise that in understanding concepts like 'mental capacity' we should explore what these concepts enable us to do.

There have been attempts to look for ‘cognitive correlates’ of mental capacity by researchers (e.g. Palmer, 2004), but I personally doubt whether these are well founded in principle.  No doubt soon enough we shall see neuroscientists claim to have found the areas of the brain that light up when a person “has capacity”; I hope these claims are treated with the critical caution they deserve.  A key problem with such reductionistic approaches, as we shall see, is that the concept of mental capacity may take into account many features of a person’s circumstances, and many background normative orientations, that would not be picked up in the kinds of tests and scales favoured in neuropsychology.

So, the functional test says that a person is to be regarded as unable to make a decision if they are unable to understand, retain or use or weigh the information relevant to the decision.  It also includes a fourth criterion: the ability to communicate a decision; this was explicitly intended to ensure the MCA covered cases of locked-in syndrome, but may also be important conceptually and legally for people who have limited communication abilities.  Section 3(2) MCA reiterates the message of s1(3), that the most appropriate means to impart the information relevant to a decision should be sought, and a person should be supported in taking the decision for themselves as far as is practicable.  Section 4(3) MCA acknowledges that the capacity to take a particular decision can develop or fluctuate, and requires assessors to consider whether the decision could be taken at a later point when a person may have gained, or regained, capacity.

Epistemic and value commitments in understanding, using and weighing information

In some respects the MCA appears to be a paragon of liberal tolerance of any eccentric or minority views which might inform decisions, but the picture may be more complex than that.  The capacity assessor will need to elucidate exactly what ‘information relevant to the decision’ needs to be understood, retained and weighed in order to make it.  Section 3(4) MCA says that this information ‘includes information about the reasonably foreseeable consequences of (a)deciding one way or another, or (b)failing to make the decision’.  It is hard to see how this aspect of the test could avoid incorporating some subjective judgments as to what information is relevant, and some epistemic commitments about what information is ‘true’ and what consequences are reasonably foreseeable.  The recent debates around capacity to consent to sex illustrate the subjective nature of the 'relevance' point nicely; in D Borough Council v AB the doctor held it to be important that a person understands the nature of consent itself, and the emotional consequences of sex – Mostyn J, deciding, did not.

The epistemic commitments required by a test of capacity to make a particular decision may also be contentious.  Neil Allen has written a great article on this topic, called Is Capacity “In Sight”? (pdf).  He discusses a quote by Munby J in Local Authority X v MM & Anor (No. 1) [2007]:

If one does not “believe” a particular piece of information then one does not, in truth, “comprehend” or “understand” it, nor can it be said that one is able to “use” or “weigh” it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information.”32' [81]

The belief criterion may at times be contentious, particularly if a person is required to have ‘insight’ into having a particular medical diagnosis in order to demonstrate that they have the capacity to refuse treatment for it.  A person may likewise have to concur with treating professionals that a particular treatment would be beneficial, if they are to be regarded as ‘understanding’ the information sufficiently to reject it.  I can also imagine circumstances where a person could be expected to reject certain beliefs of their own to demonstrate understanding, for instance, that homeopathy will not cure cancer.  Allen discusses some interesting examples, including the famous case of Re C (Adult: Refusal of Medical Treatment) [1994] 1 All E.R. 819 (which I can’t find a free copy of online, any links gratefully accepted).  The case Re C concerned a man with a diagnosis of schizophrenia who was under the delusion that he was a great doctor.  He believed that God would cure his gangrenous foot and that medical treatments were calculated to destroy his body, although the doctors believed amputation was the only way to save his life.  The judge found that despite C’s beliefs, he had capacity as there was no evidence of ‘any direct link between C's refusal and his persecutory delusions’.  I heard through word of mouth, although I am not sure if it is correct, that C did in fact go on to survive even without the surgery.

I saw a great talk by Jules Holroyd at a CRASSH event where she discussed possible value commitments underpinning the requirement to ‘weigh’ information; in particular whether anorexic patients might be considered to lack the capacity to refuse treatment if they did not weigh the risk of death or disability sufficiently highly.  Of course some beliefs and values that are not shared by the majority, or by “experts” in a particular field, may nevertheless be accorded respect in law.  This is especially true if they are religious or culturally held by a recognised group.  The legal issue is not whether a person bases their decision on ‘incorrect’ or disputed information, or that they value something in an unusual way, rather the reason for their doing so.  If it is felt to be firmly grounded in a religious or cultural conviction, it will not pass the diagnostic criterion that the failure to believe a piece of information that the capacity assessor holds relevant is caused by an impairment of the mind or brain.  Of course, danger may lurk when 'denialism' or a religious belief are treated as symptomatic of a mental disorder in themselves.

Mental capacity is relational and contextual

“Mental capacity” sounds like a state of affairs in somebody’s head, but it is clear from the case law that the approach taken by judges in the Court of Protection places considerable emphasis on a person’s context and relationships in determining capacity.  A person’s relationships with others may be seen to either improve, or impair, their mental capacity.  The recent case of V v R (2011) is a good example of where relationships and situation have been held to increase mental capacity.  The case concerned a young woman, V, who had suffered a traumatic brain injury.  She was pursuing a compensation claim against the insurers of a vehicle that had knocked her down; her mother had expressed concerns that V lacked litigation capacity, and it was decided prudent by V’s own counsel to settle the matter in case the issue came up later on in proceedings.  According to the testimony of V’s mother, V lacked the concentration required to read legal documents, was prone to making impulsive decisions, and any decisions she did take she took on the advice of her mother.  “The reality” according to V’s mother's testimony “was that she and not the claimant would make any material decision.” [29].  The experts were divided in their views.  In the end, the judge concluded that the difficulties that V might have in making decisions ‘are capable of being ameliorated, if not entirely overcome, by the careful and structured support that the statute contemplates’, and thus V was held to have capacity.  The finding that V had capacity was thus not based on what V could achieve in isolation, but on the practical reality that she went through all major decisions with her mother and based them upon her advice, that her mother conducted the day to day running of the case, and that this support was likely to continue in the future.  Thus V’s relationships and the context within which the decisions were taken were central to her having ‘mental capacity’, even though on one view the decisions are “actually” being taken by her mother.

In stark contrast to cases like V v R, are cases where a person is found to lack capacity in part as a result of the coercive influence of others upon their decision making.  Perhaps the best known case of this variety is Re T (1992), where a pregnant woman who was Jehovah’s Witness refused a blood transfusion following a road traffic accident.  The court held that T’s refusal of treatment was not valid, in part because she had not been properly informed of the risks, but also because it was felt that her decision arose more from the undue influence of her mother than her own religious convictions.  The case precedes the MCA, and a better example in the light of the Act might be A Primary Care Trust v P (2009).  The case concerned whether P should move out of his mother’s care, as there were concerns about her overbearing influence and disputes arising out of his epilepsy medication.  The judge commented:

It is utterly clear that they have been deeply and, as I find, unhealthily enmeshed in one another, so much so that when speaking to either about themselves or about the other, it is quite impossible to discern whose voice is actually being heard.  [25]

The reasons that I am persuaded that he lacks that capacity are the cumulative force of the following: a) his epilepsy and its impact on his functioning, b) his learning disability which is at the lower end of mild, c) the enmeshed relationship that he has with AH which severely restricts his perspective in terms of being able to think about his future, d) his inability, frequently articulated by him to those who have interviewed him, to visualise any prospect of having a different view to his mother on any subject that matters and his inability to understand what the other aspects of the argument may be in relation to his expressed wishes simply to return and live undisturbed with his mother.  [37]

In both cases the relevant person’s decisions were strongly influenced by the views of their mother, but in one case this was regarded as enhancing their capacity and in the other it was seen as diminishing it.  It is hard to see how this distinction can be maintained without regard to a wider normative framework over whether the mother’s decisions are ultimately beneficial to the relevant person or not.  Both cases may be quite sensible, practical, outcomes but – to me at least – there is something distinctly unsatisfactory about them when considered side by side.  The wisdom of the outcome of the decision is not supposed to affect whether a person has capacity or not, and yet here the substantive distinction seems to be that the support in one case leads to wise decisions, and support in the other is not regarded as doing so by the court.

The legal issue finds a parallel in some philosophy I have been reading.  Whereas traditionally ‘autonomy’ – the ability to govern oneself and one’s actions – has been regarded as centred within an individual, some new approaches stress the relationality of autonomy.  The Stanford Encyclopedia entry on autonomy in political and moral philosophy has a useful summary and references on this approach.  Writings on relational autonomy tend to focus on issues of oppression, but I read an interesting paper by Francis and Silvers exploring how the autonomy of people with cognitive disabilities could be enhanced through relationships with people they called ‘trustees’ who could assist them with reflection and reasoning (the paper is published in this book, or in a special issue of the journal Metaphilosophy).  Francis and Silvers liken the role of a ‘trustee’ to that of a prosthetic limb for an athlete, and they emphasise that all of us are dependent on others and society more generally to help select and refine the information and values upon which we base our decisions.  I have no difficulty accepting the latter point, but I think I do – on reflection – reject the prosthetic parallel.  The problem is that whilst one’s prosthetic may of course enable a person to run, it is unlikely to be said, itself, to do the running.  It is never likely to be attributed with exercising control over a person in the same was that a ‘trustee’ who helps a person to make decisions could be.  It is a tool that is manipulated by the wearer; it does not have the potential to manipulate.

This seems to me to bring us back full circle to the legal problem; we cannot distinguish between a controlling or a supportive influence without reference to both the outcome of the decision made and an extrinsic normative framework about the value of that outcome.  I may be understanding an interesting essay by Jules Holroyd incorrectly, but I wonder if this is related to a point she makes regarding relational autonomy:

...any account [of autonomy that relies upon S standing in a certain social relation] cannot play one of autonomy’s key normative roles: identifying those agents who ought to be protected from (hard) paternalistic intervention. I argue, against objections from Oshana, that there are good reasons for maintaining the notion of autonomy in this role, and thus that such relational conceptions should not be accepted.

This short extract doesn't do justice to Holroyd’s careful article, but I hope my point is at least congruent with hers.  As is illustrated in the case of V v R, what we may want to call relational autonomy can clearly bring very beneficial consequences, but the danger (metaphysical, legal and real) lurks in how we separate off those cases from those of undue influence.

Capacity is experience based

The case law has developed a clear role for experience and learning in capacity.  In D Borough Council v AB Mostyn J found that ‘Alan’ lacked the capacity to consent to sexual relations, but the court directed that attempts should be made to remedy this situation by providing him with sex education, so that he might attain capacity.  For some issues, a lack of life experience might impair someone’s ability to make a decision because the only way to understand the information is through experience.  For example, in A PCT v P (2009) Hedley J says:

...until P has experienced something other than the care of his mother, then he has no opportunity to make true choices about what he wants for himself.  In the circumstances of this case, it is said this can only be achieved by prising him out of his current relationship, significantly curtailing contact and thereby allowing space for the development of a new experience.  Some believe, and leading amongst those is Dr Milnes, his treating psychiatrist, that this will lead to his regaining capacity and it is recognised that should he do so, that may result in a choice to return to AH.  [57]

Clearly it is rather a drastic step to remove someone, involuntarily, from the care of a parent to enhance their mental capacity, and to do so could not be justified by s1(3) MCA alone.  In this case it required the use of the deprivation of liberty provisions of the MCA.  The Law Commission acknowledged in their earliest paper on mental capacity that:

Maximising freedom or providing equality of opportunity goes beyond mere non-interference. It can, for example, imply a need actively to encourage people to take risks. Even if this has adverse short term consequences , there may be long term benefits which cannot be acquired in any other way. Nearly everyone can learn by experience, however slowly. If harm is taken to include under-achievement and lack of fulfillment, are mentally incapacitated people put at greater risk of harm by receiving too much care and protection, or too little?" [1.12]

So capacity can fluctuate not merely according to one’s physiological state, but also according to the opportunities and learning experiences available to a person.  And opportunities to learn and develop may entail taking risks, which need to be balanced against the overall benefits of increased personal autonomy and fulfilment.

Assessment of capacity

I’ll bring these comments to an end now, although this far from exhausts the matter.  I hope I’ve given some convincing reasons to doubt that mental capacity could be determined solely by reference to performance in some laboratory tests or a brain scan!  I just wanted to offer some passing thoughts on the assessment of capacity itself.  We have seen that the case law acknowledges that mental capacity may be contingent on a person’s relationships with those in their immediate circle, their life experience, and their current context, but I think it’s also important to note that it may depend on their relationship with the capacity assessor themselves.  The context of capacity assessment, and the relationship a person has with the person assessing their capacity, may impact on the outcome of the test.  The ability a capacity assessor has to communicate with the relevant person will affect the outcome directly – through MCA s3(1)(d), but also indirectly as they may be less able to communicate to the relevant person the information required for the decision.  This means, for instance, that the level of staff training in communication techniques like Makaton, or even staff turnover, may have a direct effect on the ‘mental capacity’ of people within a particular service.  If a person does not like or trust a particular member of staff or professional, they may not engage in full enough communication to evidence their capacity.  The quality of the relationship may be paramount; we should be concerned, therefore, about the effect of services that do not provide good continuity of care upon a person’s ability to exercise what autonomy they are potentially capable of.

Another issue around capacity assessment that troubles me, particularly where assessments are very formal and undertaken for the purposes of writing a report, is that the assessment process itself may be experienced as an invasion of someone’s privacy.  Even if a person is found to have capacity, the experience of being assessed, having to give reasons for one’s decision, demonstrate that one understands and can weigh certain pieces of information, could potentially be quite intrusive.  It certainly has the potential to place a person in a position of felt inferiority to the person doing the assessing.  I sometimes wonder whether professionals undertaking these kinds of assessment seek the consent of the relevant person first, and of course, whether that assessed person has the capacity to give that consent.  Directions from the court might dispense with the need for that consent, but I do sometimes wonder what happens about capacity assessments that precede court hearings where a person refuses to co-operate with the process.  I heard recently about a case where a person was thought by their solicitor to lack litigation capacity, so the solicitor wrote off to their GP who replied that in their view they lacked it.  I have no idea about the veracity of the claim, but it would trouble me if the relevant person had not consented to that information being disclosed.

It is a wider problem in Court of Protection cases, that I have commented on before in relation to the case D Borough Council v AB, that in striving to ensure people’s rights are upheld, there are dangers that the legal processes themselves may entail other harms which will need to be balanced.  I can see no obvious way around this; I support the principle that people should be protected against harmful decisions they lack the capacity to make, but the very act of assessment that this principle entails may be experienced as oppressive or demeaning by some.  We should approach capacity assessment, therefore, respectfully and with caution, and be careful not to forget s1(2) MCA: the starting point is the presumption that all people, regardless of appearances, have capacity. 

39 Essex Street Court of Protection February Newsletter

The excellent 39 Essex Street Court of Protection Newsletter for February is now out.  I can't recommend this newsletter enough, not just for keeping up to date with Court of Protection cases but also for interesting commentary and round up of cases you might have overlooked.  It also discusses some cases not yet published elsewhere.  You can find it, along with older editions, here:

http://www.39essex.com/newsletters/?resultpage=1&

Excellent commentaries on the case of 'Alan' (which I discussed in this post).  Edited highlights:

Vikram Sachdeva says:

The correct test for capacity to consent to sexual relations is a highly controversial topic. The answer depends on an examination of the philosophical basis underlying incapacity law – specifically whether it is justified (on a utilitarian basis) to prevent significant sections of the population from indulging in sexual activity in order to prevent abuse in a small number of cases, or whether fewer should be barred from sexual activity, but with a risk of abuse in a small number of cases which would have otherwise been avoided.

Victoria Butler-Cole points out that:

The law on capacity to consent to sexual relations is in disarray. This decision conflicts with the recent decision of Wood J in LS, and it is difficult to see how the two judgments can be reconciled (or how this judgment can be reconciled with that of the House of Lords in R v Cooper [2009] 1 WLR 1786.

 And...

If this decision is correct, it is clear that the criminal test for capacity under s.30 of the Sexual Offences Act 2003 and the civil test are not the same; a point which was not acknowledged in A‟s case. It may also, counter-intuitively, impose more restrictions on people with learning disabilities rather than promote their sexual freedom, since where an exploitative or abusive relationship exists, the inclination may well be to „fail‟ the individual on the test for capacity (as there is inevitably a degree of flexibility about how much knowledge of, for example, STIs, is required). This could then result in a global declaration preventing sexual contact for the individual in other, non-exploitative contexts. Local authorities and those working in this area can only hope that the issue does receive consideration by the Court of Appeal in the near future.

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.]

An introduction to the deprivation of liberty safeguards

This posting is a brief summary of the deprivation of liberty safeguards for anyone who doesn't know anything about them, but would like some more information. I'm going to be talking a lot about the deprivation of liberty safeguards and the Mental Capacity Act in future postings, some in more technical detail, so it's handy to have a post for me to refer back to for anyone who's new to the concept.



What is a 'deprivation of liberty'?
It seems logical to being with explaining what a deprivation of liberty is, but unfortunately that's one of the hardest things to understand about the safeguards. It's probably easiest to talk you through their history and some examples, because there is no straightforward definition.



The 'deprivation of liberty safeguards' were introduced in 2009 following a famous court case, often called the 'Bournewood case'. The Bournewood case concerned a man called HL, who was autistic and lived in an adult foster placement in the community with two carers, Mr and Mrs E. One day at his day centre, HL became very agitated and distressed. His GP was called, who gave him a sedative and it was decided to take him to Bournewood Hospital. At Bournewood hospital he was admitted 'informally' for assessment and treatment. An 'informal' admission means the hospital don't have legal powers to detain someone; it basically means they are not 'sectioned' under the Mental Health Act. 'Sectioning' under the Mental Health Act means hospitals can detain people who refuse consent to be admitted and treated; the problem for people like HL is they are deemed to 'lack mental capacity' to either give or refuse consent to be treated. This means that when they are compliant, they were historically treated as if they had consented to being admitted. In law though, if someone lacks mental capacity, their being compliant doesn't mean they have consented. HL was very likely 'compliant' because he was heavily sedated, because he lacked the practical and communication skills to kick up a fuss about being incarcerated, and perhaps he was heavily institutionalised having grown up in a long-stay hospital (Bournewood hospital, in fact).



Things came to a head because the hospital refused to let Mr and Mrs E, HL's carers, visit him. They said this was because they didn't want HL to think he could go home with them. Mr and Mrs E took up court proceedings, demanding that HL be returned to their care. They didn't give up, even when the House of Lords said that HL had not been detained (because he'd never actually tried to run away and been prevented) and that even if he had, professionals had acted out of 'necessity'. They fought the case all the way to the European Court of Human Rights, who agreed with Lord Steyn that it was a 'fairy tale' that HL had been free to leave. The European court heavily criticised the UK system of 'informal' detention, because it lacked any proper safeguards for people and their families to appeal inappropriate detention. In response to this judgement, the UK government drafted the 'deprivation of liberty safeguards'.



Since the 'Bournewood case', there have been many other cases where the courts have been asked to determine whether a person is deprived of their liberty or not. The courts found, for instance, that a man in a care home who was not allowed to return home to his wife was deprived of his liberty. They found that a woman with dementia, who was to be removed from her home because her wandering placed her in danger, was deprived of his liberty when moved to a care home. They found a young man with learning disabilities, who was removed from the care of his mother against his and her wishes, was deprived of his liberty. They found that when Manchester Council removed a young man with learning disabilities from his foster carer on 'safeguarding' allegations, and placed him in supported living, they unlawfully deprived him of his liberty.


However, they also found that another young man with learning disabilities who was removed from his mother's care by police was not deprived of his liberty, in no small part because he didn't want to go back to her. They found that adults or children with learning disabilities who live with their parents or foster carers are generally no deprived of their liberty, even if they are locked in their rooms at night and under their carers' constant monitoring. It's really difficult to give any general rules about what constitutes a deprivation of liberty; in my view the courts haven't really produced a consistent line on this, and it's something I'll try and write about in the future. For now though, if you have any suspicions that you or someone you care about is deprived of their liberty, please read on for information about your rights.

What are the 'deprivation of liberty safeguards'?

The deprivation of liberty safeguards, often called the DoLS, are a set of administrative and legal procedures which are there for the protection of anyone who is deprived of their liberty in care homes or hospitals in the UK. Before going on to outline them, it's important to remember that just because the DoLS only apply in care homes and hospitals, people can be found to be deprived of their liberty in supported living or other types of accommodation as well (see below for more on this).


If a care home or hospital deprives someone of their liberty, they have to apply to their local 'supervisory body' for authorisation. For hospitals, the supervisory body is the local Primary Care Trust. For care homes, the supervisory body is the local authority. Most supervisory bodies have a specialist team who deal with these applications, and the ones I am acquainted with are very approachable and friendly and happy to answer questions from professionals or members of the public with specific concerns. So, once the care home or hospital has applied to the supervisory body for 'authorisation', the supervisory body has to carry out a number of assessments to ensure that the deprivation of liberty a) is actually occurring, b) is appropriate. These include checks on the age of the relevant person, whether they have a qualifying mental disorder that warrants 'detention', how restrictive the type of care being provided is and whether it's in the person's 'best interests' to meet their care or treatment needs in that way. If all the qualifying criteria are met, the supervisory body must grant authorisation to the deprivation of liberty for a maximum period of a year, and ensure that they appoint a 'representative' and/or an Independent Mental Capacity Advocate (IMCA) to ensure the relevant person's rights are upheld (more on this below).

The assessment process

There are two key figures in this assessment process: the mental capacity assessor (often, but not always, a medical doctor) and the 'best interests' assessor. Mental capacity assessors check whether the relevant person has the mental capacity to make decisions about their own care – if they have capacity, they might, for instance, decide they want to stay in the care home or hospital (they 'consent' to it), or they might want to discharge themselves. Best interests assessors make sure the care plan is the 'least restrictive' it can be in order to provide the necessary care, and that it is in the person's best interests to provide care in that way. They should consider alternatives, although there seems to be some confusion about how wide the range of alternatives should be. In one case, the judge said that local authorities should always ensure placements with family carers are the top priority of any possible placements, which suggests that supervisory bodies should be considering whether care could be provided with families – if they are willing, and with appropriate support – rather than placing someone in residential care against their family's wishes.

Representatives and IMCA's

Supervisory bodies should appoint an appropriate friend or relative of the relevant person to be their 'representative' under the DoLS. The representative is a very important figure in the DoLS, and they have lots of special rights that are key to making sure the safeguards operate fairly. A guide for representatives by the Department of Health is available here. Representatives have the right to see any reports or assessments about the relevant person, they must also be consulted by the assessors and kept informed of the status of any deprivation of liberty authorisation procedures. If a representative does not agree with the outcome of the supervisory body's authorisation process, they have the right to seek free legal advice and representation, and appeal in the Court of Protection. These are really really important rights, because otherwise it can be very expensive to get legal advice about a deprivation of liberty case, and you might have to pay a lot of money even to ask permission to take the case to the Court of Protection (if this is your situation, don't give up, see below for more suggestions).



Sometimes people who lack mental capacity don't have any friends or family who would make an appropriate representative. In this case, the supervisory body must appoint them an Independent Mental Capacity Advocate (an 'IMCA') who can stand up for the relevant person's rights. The IMCA is an independent figure, who can scrutinise the DoLS process and make sure everything is going as it should – IMCA's can also refer the case to the Court of Protection if they have any concerns.

Section 39D IMCAs: Vital help for representatives and carers

If you are appointed to be a representative, the DoLS can still be very bewildering and it can be difficult to know what your rights are and how you can protect them. Supervisory bodies have a duty to offer representatives the support of a 'section 39D IMCA'. These are people with considerable experience and knowledge of the DoLS, who are appointed to help both the relevant person and their representative navigate the safeguards. An IMCA could, for instance, come to meetings with professionals and offer support, or could help you understand assessments or legal documents. This is a great resource, but not all supervisory bodies remember to offer this help – in fact, some might not even be aware that you have this right. If you are a representative and you think an IMCA might help you, don't be afraid to ask for one - they can be an invaluable source of support and make the entire DoLS process operate more smoothly.

If you're not a representative

A recent report by the Mental Health Alliance found that some supervisory bodies were deliberately picking representatives who supported the deprivation of liberty, and overlooking carers or relatives who opposed it. This is a bit sneaky, because unless you are appointed to be the representative you don't have access to the reports and information you would need to challenge the deprivation of liberty, and you don't have access to free legal advice or representation to bring the case before the Court of Protection. If this is your situation, and you oppose a deprivation of liberty, there are few avenues left open to you. The best first option is probably to politely raise it with the supervisory body, and request that they consider making you the representative or write to you explaining why you were not considered an appropriate choice. If that does not succeed, you may have to seek further advice from local advocacy services or specialist solicitors (see below for guidance on finding solicitors).

If you think someone is being unlawfully deprived of their liberty

If you think you, or someone you know, is being deprived of their liberty without authorisation, the first people to raise this with are the managing authority of the organisation providing the care. In a hospital, this would be the hospital management. In a care home, this would be the registered care manager. If this is occurring in another setting, for instance 'supported living' accommodation that is not a registered care home (you can check this by looking at their CQC inspection report to see if it says 'care home' or 'domiciliary care'), then you should still raise it with the management but bear in the mind that the DoLS will not apply (read on for more information).

Once you have raised it with the managing authority, they have a duty to consider making an application for authorisation from the supervisory body. If they do this, then the assessment process will be triggered as described above. If they do not, and you still believe the relevant person may be being deprived of their liberty without authorisation, then any member of the public has the right to directly request that the supervisory body assess whether the relevant person is being deprived of their liberty. You can do this by contacting the local authority or PCT directly, saying that you think an unlawful deprivation of liberty is occurring and providing the details. There is also a template letter available in this guidance for carers, provided by the Department of Health.

If the DoLS don't apply

When the DoLS were set up they were intended to apply in care homes and hospitals. Even at the time, the Commission for Social Care Inspection (now the CQC) and various other agencies reminded the Department of Health that lots of people who lack mental capacity – particularly people with learning disabilities – actually live in supported living accommodation rather than care homes. Unfortunately, the Department of Health did not take this advice on board and the DoLS do not apply in care homes. This means that there is no assessment process, no free legal aid for representatives and no free right to take the case before the Court of Protection for concerned relatives. It's a big old mess. Some supported living services actually believe that because the DoLS don't apply to them, it's impossible for them to deprive someone of their liberty. It's not. It's happened in this case, and this. If you think that you or someone you know is being deprived of their liberty in supported living accommodation, or perhaps even in their own home by domiciliary care staff, then probably the best first port of call is to contact the local authority and see if they will initiate an investigation under 'safeguarding' procedures. Some local authorities take deprivation of liberty very seriously, and will do this.



If contacting the local authority or PCT does not resolve the problem, the only option may to bring the case before the Court of Protection. Because the DoLS don't apply, you won't have an automatic right to legal aid, although you may still qualify if you are on a low income (contact the Community Legal Service for more advice on this). If you want to attempt to bring a case without legal representation, you would still have to pay a fee yourself to the court. If you plan to go to court alone, you might find the Personal Support Unit's services helpful. There is guidance here on applying to the Court of Protection; the number for the Court of Protection is 0300 456 4600.

Finding solicitors

People who are deprived of their liberty under the safeguards, and their representatives, have an automatic, non-means-tested right to legal aid.  If you are a representative, or you want legal advice on these matters, you will need to find a solicitor who specialises in the deprivation of liberty safeguards. This may be harder than it sounds, as most high street solicitors do not practice in this specialist area. There are no listings of solicitors who practice in this field, but contacting solicitors from the Mental Health Lawyers Association's regional directory is probably a good start. The Law Society also has a 'find a solicitor' search engine, where you can enter your postcode and choose 'mental health and incapacity' from the dropdown menu. Not all solicitors practicing in mental health law will have expertise in the DoLS, but it is probably worth asking them for recommendations of anyone in the area who can. You may have to phone a great many solicitors firms before you find someone who can take on your case, if this occurs please don't be disheartened and keep persevering. And good luck!