Joint Committee on the Draft Mental Incapacity Bill Written Evidence

134.Memorandum from Dr S Conboy-Hill (MIB 1164)

  Our team has broadly welcomed the Draft Bill, recognising that the current position is unacceptable, and acknowledges the effort and expertise that has gone into its production. We have also followed closely the proposals contained in the documents "Who Decides?" and "Making Decisions", modifying our practice accordingly. The following comments are made with specific reference to adults with learning disabilities for whom the Draft Bill seems to make only token provision, its focus appearing to be largely on those who have had and then lost capacity or whose functional capacity fluctuates.


  1.  Although learning disability is mentioned, there seems to be an assumption of initial capacity or history of capacity during which a person might make provision for incapacity or from which speculations about wishes and preferences might be derived by someone acting on their behalf.

  2.  This seems to be reinforced by the comment that a Deputy of the Court of Protection would be appointed where someone has not made, or has never been able to make, a Lasting Power of Attorney (LPA). There is no specific reference to learning disability, one of the few situations in which capacity may be questionable and/or graded throughout life, and so it is unclear how such a person might make an LPA or avoid being influenced into making an unwise appointment through expedient assumption of capacity (see below).

  3.  There is a requirement to assume capacity in the first instance. This may lead to expedient actions achieved through acquiescence, choice bias, lack of knowledge of alternatives in the recipient, power imbalance, and lack of assertiveness in the vulnerable adult.

  4.  Capacity has to be demonstrated at the time required. This is based on the notion that the necessary information does not have to be retained permanently but leads to the possibility that people lacking skills and crucially, time, to interview a client will be responsible for assessing capacity for example just prior to planned surgery.

  5.  The Bill is written as though the person has insight into the proceedings and complexities (see 1. above) and can at times, take some form of action. While this may be the case for some people, those with greater and lifelong impairments are unlikely to be in this position. People with good social presentation skills are particularly vulnerable to unfounded presumptions of capacity and many can be falsely believed to have capacity through unskilled interviewing.

  6.  Effective discharge of duty in the spirit of the Bill hinges on communication. Where people have no history of capacity through severe disability or whose capacity is graded and allows for competence in selected areas, skilled information giving and assessment of understanding are crucial. Bias, whether motivated or unconscious, is almost inevitable where there are vested interests and vulnerable adults need protection from the misguided or wilfully controlling actions of those who seek to represent them. Some user groups are particularly concerned about the role of families, saying that "parents have too much control already" and others want to draw the emphasis away from capacity per se to better access to information and to skilled advocacy.

  7.  The powers given by the General Authority to act reasonably, the LPA and the role of Court Appointed Deputy are potentially pervasive and carry serious consequences for the person without capacity. There seems to be an underlying assumption of goodwill and good intentions in those who seek to take these responsibilities and while this is likely to be the case in many situations, it will not be for some people. Similarly, good will and good intentions are not guarantees of good practice or competence. The Bill needs to make clear the lines of accountability that accompany these roles, to ensure that multidisciplinary teams have access to these lines in the event of dispute or concerns, and to make provision for advocacy against the advocate" where necessary.

  8.  People acting in the General Authority, LPA and Deputy roles are essentially operating as advocates but with considerable power over the individual without capacity. Advocacy is essential where there is vulnerability but the role itself requires an independence of thought, capacity for reflection and self-analysis, objectivity and separation of needs that, in therapists, can take many years of training to achieve. Experience of adults with profound learning disabilities and their advocates has included worrying representations of "wishes" where we could not be certain any existed. Combining this role with legal authorities would seem dangerous if not moderated by multidisciplinary scrutiny.


  By definition, a person with a learning disability is someone who, from childhood, has had significant limitations of intellectual and social function such that at least 97.5% of the population would exceed their capabilities in these areas. Elsewhere described as having "arrested or incomplete development of mind", Significant Learning Disability translates into IQ 69 or below (see DoH guidelines) or a range that, at its highest boundary, reaches IQ 73. Severe Learning Disability refers to the capabilities of people with an IQ of 55 or less (see British Psychological Society guidelines). Commonly people in the learning disability range have no discernible cause for their intellectual limitations. Possible explanations include normal distribution (of IQ) and social and educational deprivation. Others have been impaired by genetic disorders such as Down's Syndrome or by brain trauma following infections, hypoxia, birth injury, or early head injury. Autistic Spectrum Disorder is over-represented in the learning disability range but is not necessarily associated with cognitive limitations. As a disorder of social behaviour and communication, there are implications for people with ASD whether this coexists with learning disability or not.

  The Draft Bill proposes that carers and professionals working with people lacking capacity will be issued with guidelines about how to function within the Act when it becomes law and, critically, how to assess capacity. These guidelines have not yet been issued and consultation will be sought in their construction. We look forward to participating in this process.


  This says that a person lacks capacity if, at the time a decision has to be made, the person is unable to make it due to a permanent or temporary disturbance in the functioning of the brain.

  A person will be seen as unable to make the decision if:

    —  They cannot understand the information.

    —  They cannot retain the information.

    —  They cannot use the information as part of the decisionmaking process.

    —  They cannot communicate their decision.

  The Bill requires all practicable steps to be taken to help the person make a decision and does not require long-term retention of the information for that decision to be valid. It also says that an "unwise" decision should not be treated as evidence of incapacity.

  This is clearly crucial to identification of both capacity and incapacity and raises the following issues for adults with learning disabilities.

    —  An unwise decision may be an indication of poor understanding, lack of information or historical fears of a proposed course of action while assumption of capacity may result in both denial and imposition of services (through acquiescence and choice bias). At present we err on the side of caution where important decisions about health, finances, or living circumstances are to be made. Individuals are given information over time in appropriately constructed packages (discussion, booklets, drawings etc) and then interviewed for evidence of retention and understanding of this information. A variation of the Cognitive Interview is used for this purpose since it capitalises on contextual free-recall, non-leading questions and a structured component based on required knowledge.

    —  If a person's capacity to retain this information towards their decision is so short that it may have been lost between the interview and the date of the proposed action, it is difficult to see how capacity might be assessed by the professional requiring evidence of it before proceeding. At present a report is sent detailing the interview process and its conclusions but video evidence of the interview in the manner of Memorandum Of Good Practice (MOGP) Vulnerable Adult testimony may also be useful.

  The commentary on clauses of the Draft Bill says that the ability to communicate a decision is a residual category only affecting a small number of people such as those with Locked in Syndrome. It seems to be assuming that someone who is able to communicate a decision will also be willing to do so and will make every effort to that end. In making this assumption, the commentary fails to recognise the particular difficulties of people with Autistic Spectrum Disorder, those who are electively mute, and people who will only communicate under particular and not easily replicable conditions. Failure to communicate a decision may not then, reflect lack of knowledge or understanding but if the decision cannot be accessed even with the assistance of people who know the individual and have the right skills, it is difficult to see how this category can be viewed as residual. Following from this, a further difficulty arises when we are asked to accept non-verbal expressions of consent or refusal of consent in place of a verbal expression. We would argue that this is reasonable where the information base upon which the person is making their decision can be assessed but otherwise is open to error. People may attend a hospital or clinic, offer their arm for blood tests, or sign a document for example through acquiescence and passivity. Similarly, they may refuse to attend, comply or cooperate through fear, past experiences, lack of information or poor understanding.


  Ascertaining best interests in terms of preferences, wishes and feelings, and promoting a person's capacity to participate is a skilled job. Any person charged with this duty needs to be able to use techniques known to reduce informational contamination in gaining access to a person's views and to separate their own needs from those of the vulnerable adult.


  "It is lawful for any person to do an act when providing any form of care for another person (P) if . . . P lacks, or the person believes that P lacks, capacity in relation to the matter in question, and, in all the circumstances it is reasonable for the person to do the act."

  This may leave vulnerable adults open to abuse in situations where the carer, whether family, friend, partner or paid, is operating in relative isolation with an acquiescent adult whose ability to complain or to access people who might hear a complaint is limited. It also begs the question of what is "reasonable".

  Restrictions on the General Authority include "restriction of movement, whether or not P resists". This may have implications for legitimate physical interventions designed to prevent or minimise harm to the person or others but is also open to the same abuse as the authority to act in that a person who "reasonably believes" that restriction is necessary to avert a "substantial risk of significant harm to P" may feel able to apply such a restriction. The Draft Bill does not mention of the use of restrictions to prevent harm to others. Learning disability services often provide for people whose behavioural repertoire includes physical aggression and self-harm. Many are not subject to any Section of the Mental Health Act and so methods of control and restraint often used in that context do not apply. Instead there are agreed protocols that specify last resort physical interventions in the interests of the safety of the individual and those around them. Failure in this Bill to provide for the safety of others could lead to serious difficulties in providing safe community services for adults with challenging behaviour.


  An LPA can only be created by someone who has capacity to do so and in relation to themselves. It is not clear how a person with a learning disability might make an LPA, how capacity to do so might be assessed or, in fact, how one might gain informed consent to begin the process. While it is clear that many people have caring families who will do their best for a vulnerable adult, many others have families or carers whose actions are controlling at best and sometimes descend into the abusive and exploitative. Even those who would see themselves as having the best motivations regarding their vulnerable relative may be emotionally rather than objectively driven and can often fail to allow the freedoms to which other adults of similar capabilities have access. Some user groups are very concerned about the powers families may be given under this Bill and want to see more independent advocacy instead.

  Those acting on behalf of a vulnerable adult should be open to scrutiny so that concerns can be raised. The Child Protection model may be of some help in establishing protocols particularly as some of the issues are similar and range from wilful abuse of a victim who is unable to report this to unwitting abuse of someone who is unaware that they are being abused but whose quality of life could be significantly improved if certain actions were to be changed.

  In terms of Personal welfare, the LPA does not allow an individual "to use, or threaten to use, force to secure the doing of an act which P resists, or to restrict P's liberty of movement whether or not P resists, unless . . . "P lacks, or the donee (the person appointed to the LPA) reasonably believes that P lacks, capacity in relation to the matter in question and, the donee reasonably believes that it is necessary to do the act in order to avert a substantial risk of significant harm to P . . ."

  This carries the same risks as the General Authority to act reasonably but may be more likely to occur in private. Wherever matters of physical restriction may be thought advisable, risk assessments and clear protocols should be in place for determining all aspects of the intervention and reviewing its necessity. The Bill needs to make clear the duty of those with General Authority or LPA responsibilities to consult professionals and work within clear guidelines in such situations.

  A further serious concern is the section of the Bill that seems to give those with LPA the authority to make decisions about a person's personal welfare which extends to "giving or refusing consent to the carrying out or continuation of a treatment by a person providing health care for P . . . if P lacks capacity to give or refuse that consent".

  It does not extend to life-sustaining treatment unless there is provision within the LPA agreement about this but might be used to deny access to a variety of activities and treatments that are not life-sustaining but nevertheless valuable to the vulnerable adult. An example might be counselling or group work aimed at enabling the person to become more confident and assertive thereby making them less malleable to the person with LPA, or denial of contraceptive advice/treatment in accordance with the beliefs or preferences of the agent but not necessarily the vulnerable adult.

  One wonders how the vulnerable person represents themselves if the carer does not see the potential for capacity or actively or unconsciously denies this.

  These concerns extend to other areas affected by the LPA. Some measure of objectivity, scrutiny and review needs to be built into the LPA agreement to avoid the very real possibility of unwitting or malicious manipulation, exploitation and abuse of adults whose capacity will not return and whose access to those who might notice their predicament may be restricted by an individual with legal powers acting apparently in their best interests.

  Many people with learning disabilities are already recipients of specialised services and so a provision exists within which structures might be developed to assess and monitor capacity issues, including the activities of those with LPA and general authority.


  This refers to the person with LPA responsibilities. We have experienced difficulties when the parent of an adult with learning disabilities becomes unwell either through mental health problems or a dementing process. Assessment of the parent can be protracted because understandably they have the same rights to careful evaluation as anyone else. In the meantime the vulnerable and dependent adult may be neglected and sometimes abused. An example is of an elderly woman who began to dement and refused meals-on-wheels and home help for herself and her mid-40s son with learning disabilities and a profound hearing problem who was also not allowed to leave the house. Both were undernourished, dirty and had minor infections. There was no legislation that allowed us to remove the son against his will for his own protection or to enter the house without permission. The Bill needs to be sure to make provision for eventualities of this kind so that both vulnerable adults can be properly and lawfully protected.

  The LPA can be cancelled or revoked at any time by the donor while they have capacity to do so but it is not clear how this might be assessed nor is there any indication of how LPA might be challenged by someone other than the donor. The commentary makes it clear that a doctor can challenge the donee of General Authority, LPA and Deputy if they are thought to be in breach of their duties but seems to refer to life-sustaining treatment rather than qualitative matters of health, care and welfare. No other health practitioner is mentioned and, since most adults with learning disabilities are more likely to have contact with specialists other than medical practitioners, this seems to be a serious omission.


  For some adults with learning disabilities, the Court of Protection is the most likely source of an advocate in respect of capacity issues given that they may be deemed unable to appoint an LPA. For others there is the delicate balance of rights and protections such that principles dictate we should assume capacity—in this case to make an LPA, while experience suggests we should assess any vulnerable adult intending to make a decision of such significance.

  While the whole ethos of learning disability services is to promote independence and support people in taking major (and minor) decisions in their lives, the very fact of requiring a service from us suggests that the individual is vulnerable and that the thinking and reasoning necessary to a given decision may be beyond the capabilities of the individual.

  Professionals in this field have always walked a delicate path between allowing people to make mistakes and using persuasion to gain cooperation with an assessment process. The draft Bill, in its implicit emphasis on those with a history of capacity and its explicit assumption of capacity, gives no guidance to those of us who need to assume capacity in principle while suspecting incapacity in practice and to find a way of offering assessments of capacity to people whose vulnerability may lead them to make uninformed decisions that would be in line with the content but not the spirit of the Bill. It would be helpful to have acknowledged the particular difficulties associated with those adults whose condition vis a vis capacity is enduring and neither deteriorating nor likely to improve, who have the right to protection from mistakes that may carry serious consequences, but who also have the right not to have their capacity challenged simply because they have a learning disability.

  Many adults with learning disabilities are in contact with local specialist services. Structures exist to provide multidisciplinary reviewing of needs and standards. Those for whom a Deputy is appointed by the Court of Protection would seem very likely to be known and so the Deputy might usefully operate within this framework since they too have an obligation to take the views of others into account when making decisions on behalf of the person lacking capacity.


Assumption of Capacity

  A 21-year-old woman with Down's Syndrome was referred for sterilisation. The Consultant Gynaecologist interviewed her with her mother and she seemed to be clear that sterilisation was what she wanted. Charlie was bright, communicative and self-assured, nevertheless the consultant was concerned that her capacity to consent was being "taken a little too readily". Charlie was referred to the learning disability service where a specialist interview showed that the driving force behind the request for sterilisation was Charlie's mother whose fear of disability extended to telling Charlie that all her babies would be crippled and die in pain. Charlie herself believed that sterilisation was reversible and that she could have children later, saying that she wanted them to be normal and happy "like me". Eliciting this information took 5 hours over three appointments. Charlie has not been sterilised.

  Jim was an elderly man who had lived in institutions much of his life. At some stage, a bladder disorder had been suspected and Jim had a cystoscopy under general anaesthetic. Although autistic, Jim was able to describe the main elements of the investigation and was clearly consenting to having the same procedure again. Unfortunately, this took place under local anaesthetic, causing Jim a great deal of discomfort and fear. When further investigations were recommended, Jim refused because of the recent bad experience but because cancer was suspected, the investigation was thought to be essential and in Jim's best interests. A multidisciplinary meeting took responsibility for recommending that the investigation went ahead and specifying that this should be under general anaesthetic. A cancer was found and Jim was treated.

  A man with ASD was referred for dental treatment. Paul used language on few occasions and was thought unlikely to have capacity. His community nurse had prepared a booklet for him about the proposed treatment. This contained pictures of Paul, the hospital, the dentist's chair, a nurse, and various other aspects of the procedure. Paul's carers had gone through this with him several times at home, describing each picture and telling Paul what it meant. Paul had said very little. At interview, Paul was anxious, yawning, giggling and clapping at times. He was not able to give a spontaneous account of the information he had been given, nor would he answer any specific questions about it. Looking at his book, Paul again seemed unable to make any relevant comment, at one point closing the book and putting it away. Suddenly however, he produced a sentence in which the key elements of "hospital", "bed" and the death of his parents (both in hospital) were linked. Asked about his teeth, Paul said "let them stay there" and "no hospital", closing the book again. Further details of the interview seemed to show that Paul made a clear link between the dental treatment, the hospital and the death of his parents. He also knew what the dentist intended to do (remove teeth) and declined. Discussion with the dentist concluded that the treatment was not essential, only desirable, and that she could continue to monitor Paul's dental health since he was very amenable to examination.

  We agreed to review should treatment become essential. This assessment took over an hour and was based on the skilled input of a community nurse and Paul's carers.


  A woman with Down's Syndrome is living with a paid carer who appears skilled and attentive. However, Jill has had a number of unexplained illnesses, weight loss and a great deal of medical attention to the point where surgery was proposed. At one point Jill said that her carer was injecting her in the abdomen, raising concerns about Munchausen's Syndrome by Proxy. We were not able to get Jill's consent to blood tests without alerting her carer and Jill did not want to consider alternative residential placements, apparently idolising her carer. Our concerns were that the carer had succeeded in convincing a specialist consultant, whose letters expressed his faith in her competence, that Jill was sufficiently ill to require surgery despite the absence of supportive evidence from any other source. Eventually the carer was subtly challenged on the basis of the evidence, Jill began to gain weight, and the consultant was asked to review his position vis a vis a condition he had diagnosed as irreversible on the basis of the carer's history. Jill did not have surgery, she continues to thrive and the carer is closely monitored. This example illustrates the difficulties that might be associated with both the General Authority and the LPA where those given the powers are able to exercise authority without challenge from the vulnerable adult or non-medical professionals who know the person better than the treating clinician.


    —  The presumption against incapacity is modified in circumstances where there is good reason to believe that the person's capacity may be compromised. Evidence would include significant intellectual deficit. Skilled assessment of the individual vis a vis the decision in question would be mandatory.

    —  People with General Authority, LPA, or Deputy responsibilities discharge their duties in cooperation with the appropriate specialist teams.

    —  Other Professionals, in addition to medical practitioners, are able to challenge the actions of a person with LPA or Deputy duties.

    —  People with LPA or Deputy responsibilities should not be able to refuse consent to health services that are beneficial and/or quality of life enhancing on behalf of a person lacking capacity without multidisciplinary agreement.

    —  Explicit provision should be made for adults with severe learning disabilities to have an appropriate representative with regard to consent issues, especially where an LPA cannot be appointed or it is thought inadvisable that the person choose their own.

    —  Assessment of individuals for capacity to make specific decisions should be carried out by professionals trained in non-contaminating interview techniques. These interviews should be recorded and open to scrutiny.

    —  Assessments for capacity should be made as close as possible to the moment at which the decision is required so that evaluations of capacity are as current as possible and not reliant on clinicians who may not have the necessary skills or time.

    —  The decision about capacity will be a joint one involving the treating clinician (or other professional), and the assessor in consultation with others who know the person well. Where treatment is the goal, it can be helpful to think of this as Essential (must be done now), Urgent (necessary in the near future) or Desirable (pre-emptive or preferable) in determining how to exercise a "best interests" judgment.

    —  Where provisions such as multidisciplinary teams, Adult Protection, specialist advocacy and reviewing structures exist, these should support, inform and monitor the activities of people with General Authority, LPA and Deputy responsibilities.

    —  Child Protection, Adult Protection, and Vulnerable Witness protocols can inform implementation of the new Bill.

  The content of the Draft Bill would benefit from some adjustment in order to achieve its aim in spirit of the balance of protection and independence for vulnerable adults. While user groups are raising objections to certain aspects of it, all seem clear that the status quo is unacceptable and hope to see enactment of a Bill that meets their needs in the near future. The key to achieving the objectives of the Bill would seem to lie not in assigning powers and responsibilities to a single key individual such as an LPA or Court Deputy but in ensuring open, transparent and objective communication among all concerned with the welfare of any vulnerable person. Good models of multidisciplinary practice exist, showing that empowerment of the person fully or partially lacking capacity by means of skilled information giving and support brings benefits well beyond the primary notion of capacity per se. This Bill can either make use of these models by integrating with them or it can sit outside creating the potential for unnecessary conflict. We hope for the former.

Dr Suzanne Conboy-Hill

Consultant Psychologist for People with Learning Disabilities

September 2003

Annex 1


  Ms Lord expressed her concerns to her counsellor after reading an article in Community Care. We asked her if she would like to put these in writing to send with our comments. Ms Lord is an articulate person who takes an interest in national politics and while there are some misunderstandings which her counsellor is helping to unravel, her letter illustrates the anxieties she experiences at the idea of people who do not know her well taking control of her life.

Annex 2

Submitted by Katie Lord

  When I read some information on the Incapacity Bill I was disturbed when they said should somebody need an advocate they should be unpaid to ensure that person has no financial interests.

Because it seems to be suggesting that people from social services are being pushed out and that the next time they want to represent a person with learning difficulties ie for instance one of Suzanne's patients it looks to me as if they're insinuating a doctor, psychologist or psychiatrist's opinions no longer counts. I hate to say this but I should like to know one thing; should someone like me or me ever need an advocate is that unpaid advocate who knows the well qualified to help me or represent me?

Andrew Lee says the Bill goes against everything that valuing people stands for well yes in many ways I agree. And it also conflicts with the Human Rights Act 1998. Well I haven't got any information on the Human Rights Act but I would like to find the information. This is another thing I find frustrating. As a person with learning difficulties I don't feel as if I know all my rights—I know that sounds silly. Andrew Lee also says this Bill takes away people's right to chose that's very disturbing. Then he goes on to say if Tony Blair allows it to go through he seriously questions the Prime Minister's commitment to valuing people. Then he goes on to say if the Bill goes through he expects people with learning difficulties to be out on the street. Well I have been out on the street with dangerous people when I was placed in Hove with an unsuitable carer. I hated the place so much I decided I would sleep rough with a total stranger because I couldn't stand where I was living. I never want to be in that situation again. And furthermore, nobody in my situation should have to be faced with that nightmare possibility. This country has a big enough problem with homelessness without turning people with learning difficulties in their millions out on the street.

I don't want this Bill to go through really. A few frightening things have been suggested:

    —  This Bill takes away people's ability to choose.

    —  It goes against everything valuing people stand for.

    —  If the Bill is forced through, people with learning difficulties may end up on the streets.

  Once again this Government has failed to recognise the good people with learning difficulties can contribute to our society. We don't all picture ourselves living happily ever after in those big institutions and psychiatric hospitals.

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