Motion to Take Note
My Lords, I refer to my entry in the register of interests as honorary president of Capability Scotland.
In inviting the House to take note of the report of the Select Committee on the Mental Capacity Act 2005, I thank the members of the committee for their hard work and commitment throughout the inquiry. This was an arduous process, involving the assessment of written and oral evidence amounting to almost 2,000 pages. I also thank Judith Brooke, Tansy Hutchinson and Oswin Taylor—the committee’s clerk, policy analyst and committee assistant, respectively—and our specialist adviser, Professor Peter Bartlett, for their support and guidance throughout. That was invaluable and much appreciated by me and all members of the committee.
It is now a full year since the committee reported its findings. That may seem a long time to wait but in this case it provides the ideal opportunity to hold the Government to account for what they have done in response to our findings. It has also enabled the Government to change their mind about recommendation 13. It may assist the House if I explain that although there are 39 recommendations in the report of the Select Committee, recommendations 3 and 13 are the key ones. They concern, respectively, poor implementation of the Act and the need for replacement legislation for deprivation of liberty safeguards, or DoLS. These key recommendations underpin many of the other specific recommendations, with a few exceptions. In view of the time available, I propose to concentrate on the two key recommendations and the Government’s response to them. I hope that this approach will highlight what needs to be done to ensure the effective implementation of the Act and provide appropriate safeguards for some of the most vulnerable members of our society.
The task of the committee was to consider whether the Act was working as Parliament intended. As enacted, the legislation did not include DoLS and it marked a turning point in the legal rights of people who may lack capacity, whether for reasons of dementia, learning disability, brain injury or temporary impairment. The Act placed those individuals at the heart of decision-making and introduced principles of the presumption of capacity, assisted decision-making and respecting unwise decisions, as we do in our own lives. It also provided protection for those who could not make their own decisions, even with help, by providing for decisions to be taken in a person’s best interests in the least restrictive manner. The Government expected it to bring about,
“a quiet revolution in public attitudes and practice”.—[Official Report, Commons, 18/6/04; col. 68WS.]
However, even after 10 years that has not been achieved.
The overwhelming theme of our evidence was that the Act has not been widely implemented. That is our most important finding. I am pleased that the Government, in responding to our report, concurred with that finding. Their response said that,
“there is much work to be done if the transformative power of the MCA is to be felt by all those people for whom it was intended”.
This acknowledgement was particularly welcome, because when we embarked on our inquiry in June 2013 the departmental officials appeared confident that implementation of the Act had been a success. Nothing could have been further from reality. If nothing else, our committee has made the Government recognise that something has to be done.
When the committee referred to “poor implementation”, it is important to appreciate what that means in practice. It means that the core principles in Section 1 of the Act are not applied. It means that capacity assessments are often not carried out and, when they are, the quality is often poor. Often, those making their assessments do not appreciate that the assessment needs to be time-specific and decision-specific. Capacity is not always presumed when it should be; indeed, some of our witnesses suggested quite the opposite. Certain categories of individuals, such as those with learning disabilities and the elderly, were assumed not to have capacity unless proven otherwise.
In some cases the presumption of capacity was misunderstood, with dangerous consequences. Vulnerable adults were left at risk of harm, after disengaging from services without scrutiny of their capacity to make such a decision. The professionals involved referred to the statutory presumption of capacity, as if they were helpless to intervene. In healthcare settings, often the trigger for assessment of capacity was a refusal to accept treatment. We found this particularly disconcerting. It suggests that someone who may lack capacity but who is acquiescent is denied the protection of the Act. A vulnerable adult might undergo treatment without the relevant safeguards of the best interest test.
Supported decision-making is not well embedded in practice. Best interest decision-making is not undertaken as envisaged. In medical settings best interest decisions were widely confused with the notion of clinical best interests—in other words, the judgment of the treating clinician. The arrogation of such decisions to a medical practitioner is not lawful for patients with capacity. Why should vulnerable people be denied protection from unlawful intervention?
In referring to evidence of poor practice and failure to implement the core principles, I wish to emphasise that we also heard evidence of good practice, but the overwhelming weight of the evidence told us that that was exceptional. What were the causes of the failure to implement the Act? The most prominent one was lack of awareness, followed closely by lack of understanding. That fatal combination leads to a general failure to deliver important rights to vulnerable people.
Against that background the committee considered that the first task of government is to address urgently the very low levels of awareness of the Act, but we also recognise that awareness-raising alone will not change culture. A much wider approach is required, taking in training and professional standard-setting, and monitoring compliance across sectors. To achieve that we recommended that the responsibility for oversight of the Act’s implementation should be given to a single independent body, whose composition reflected the professional fields within which the Act operates, as well as the range of people directly affected by it and their families and carers. Most importantly, this body would drive implementation forward and act as a spur on those professional bodies and associations with a responsibility to ensure compliance. The committee firmly believed that this step was necessary if the benefits of the legislation were to be realised. That was the first of our two key recommendations.
It was a grave disappointment that the Government did not accept that recommendation in their response. The reasons for rejecting our recommendation seem to be related in part to the breadth of sectors covered by the Act and the associated difficulty of the task in designing a single body, coupled with a fear that such a body would result in people involved in the Act failing to accept personal responsibility for its implementation. I note that in their response the Government do not suggest that the task is impossible. Many tasks are difficult but well worth the effort if they achieve a successful outcome. In this case a successful outcome would be the restoration to many thousands of vulnerable people rights conferred on them 10 years ago, but denied to them because of failures of professionals in different sectors to implement this Act.
The breadth of sectors has been part of the problem in the past, with no single body having the responsibility for ensuring compliance across all sectors. I do not accept that a single body would remove personal responsibility from individuals. Rather, it would monitor and reinforce personal responsibility. What is the Government’s counter-proposal to our single independent body with overall responsibility for implementation? In November of last year the Minister, Simon Hughes, announced the Government’s intention to establish a new national mental capacity forum. While I am delighted that the Government are acting to bring together relevant stakeholders, I am concerned that the proposed forum is precisely that: a forum—or, in common parlance, a talking shop with no power or responsibility to drive forward implementation of the Act.
A further concern is the apparent lack of urgency taken to address this matter. The letter from the Minister and the accompanying schedule, for which I am extremely grateful but which was sent out last night, suggests that the recruitment for the post of chair will get under way imminently and that the first meeting of the forum will be in the autumn. Why has there been a delay of four months in the application process and why will the first meeting be a year after the Minister’s announcement? The process appears to be very slow and to lack transparency. Perhaps the Minister here can provide further detail this evening. What will be the remit and powers of the forum? Who will sit on it? How will members be selected? Will the forum have a sufficiently high profile to make a real difference? I would be grateful if the Minister could reply to these points.
However, I emphasise that my fundamental objection to this proposal by the Government is that it is not a solution to the widespread problems, across all sectors, of failure to implement the Act, and to give vulnerable people the voice and empowerment that Parliament conferred upon them in 2005. In short, it will not bring about the quiet revolution in public attitudes and practice promised 10 years ago. That will only be realised if the Select Committee’s recommendation 3 is implemented in full.
Our second principal finding and recommendation concerns DoLS. Criticism of the safeguards was extensive. It came from all parts of the process, those with direct experience of the safeguards as well as solicitors, academics, service users and the judiciary. The criticism was not just about how the safeguards were being implemented. It was about the legislation itself. The purpose behind the safeguards was generally supported, but the provisions themselves were considered overly complex, poorly drafted and having no relationship to the language or ethos of the rest of the Act.
The number of applications was considered suspiciously low by many of our witnesses and it became apparent that in many cases the safeguards were not being applied when they should have been. Witnesses suggested that thousands, if not tens of thousands, of individuals were detained without the protection of the law and without the means to challenge their deprivation. Individuals were left without the safeguards that Parliament intended. That evidence was borne out by the Cheshire West judgment, handed down by the Supreme Court the week after our report was published. Following that decision the number of applications for DoLS in the first nine months of 2014 was 90,000, compared to a total of only 13,000 made throughout the previous 12 months.
It also appeared to the committee that the Bournewood gap had not been closed by the introduction of DoLS. In the face of such wide-ranging criticism the committee was forced to conclude that the only possible course of action was to ask the Government to start again. We recommended that the Government bring forward new provisions that would be in keeping with the rest of the Act. They should be drafted in clear and simple language in order to be understood. They should be extended to include adults in supported living. The interface with the Mental Health Act needs to be made clearer to avoid new gaps arising from the overlap of those two pieces of legislation.
The initial response of the Government did not accept that there was a fundamental flaw in the legislative framework. Instead, the Government offered to instruct the Law Commission to propose a new framework to allow for deprivation of liberty authorisations in supported living. The inclusion of supported living in the authorisation scheme was welcome but was far too narrow to meet the far-ranging criticism which we had heard. I am delighted therefore to learn that the Government have now initiated a fundamental review of the DoLS legislation by the Law Commission. I understand that the Law Commission intends to publish its report and a draft Bill by summer 2017. I consider this the right course of action in the light of our findings, and I am grateful to the Government for changing their mind.
Concerns have been raised by stakeholders about the timetable for new legislation. It appears likely that, with the time required for pre-legislative scrutiny following the publication of the Law Commission’s draft Bill, we may not see new legislation on the statute book until 2020. Good legislation takes time. Our report called for the new provisions to be consulted on widely and for adequate time to be allocated to parliamentary scrutiny. That is necessary in order to get it right, but I urge the next Government to give this matter a fair wind. It is of fundamental significance to the rights of tens of thousands of vulnerable adults in England and Wales and deserves to be addressed at the first opportunity.
In conclusion, I welcome the Government’s acceptance of recommendation 13, but I wish to impress upon the House that there is no cause for complacency about implementation. The failures we identified in our report continue. Callers to the Mencap helpline continue to report that understanding of the Act among health and social care professionals is extremely limited and that it is often applied incorrectly. Family members continue to be excluded from best interest decisions if, indeed, the best interest process is engaged at all. There is still a pressing need to increase awareness and understanding to prevent the Mental Capacity Act withering on the vine. Nothing short of culture change is needed to ensure that vulnerable people are no longer failed by the Government and are empowered as Parliament intended them to be in 2005.
I hope that the Government will realise the inadequacy of their proposed forum and appreciate that the solution proposed by the Select Committee is the only one that will ensure implementation of the Act. I urge the Government to change their mind about recommendation 3, as they did about recommendation 13. That, coupled with the other recommendations accepted by the Government, in whole or in part, would result in a clean sweep of the Select Committee’s recommendations but, more importantly, would ensure that people were empowered to take decisions while enjoying the support and protection of society that they might need. I beg to move.
My Lords, I refer the House to my declarations in the register. I join the noble and learned Lord, Lord Hardie, in his thanks to all those who supported the committee. I take this opportunity to thank the noble and learned Lord for his wise chairmanship of this committee. The members of the committee very much benefited from him sitting in that chair and giving us the benefit of his opinion as our deliberations progressed.
I shall focus on recommendation 13 and the deprivation of liberty for people who are particularly vulnerable. The Government’s initial response to the committee’s recommendations was:
“We do not believe that there is a fundamental flaw in the legislative framework underpinning the current deprivation of liberty system”.
I sat on the pre-legislative scrutiny committee for the Mental Capacity Act; that seems like a lifetime ago now. I was also on the committee that took the Bill through the House of Commons and had the privilege of sitting on the post-legislative committee. I think the Government were somewhat cavalier in that comment because right the way through from start to finish there has always been debate and concern about this aspect of the legislation, not least about the Bournewood judgment. There was much debate about whether it should go into the Mental Capacity Act or the Mental Health Act, and nobody could quite make up their mind, so the idea that there is not a fundamental flaw is something the Government should have considered in a lot more depth than they did when they sent their response to the committee. However, I move on because the Minister has circulated more information about what the Government now intend to do and, like the noble and learned Lord, Lord Hardie, I welcome the fact that they will make changes following the Law Commission report. None the less, I hope the Government will understand just how complex this is. The Winterbourne View report was shared with Members of the House in a meeting convened by the noble Baroness, Lady Hollins. The Mental Capacity Act was not mentioned or used at all at Winterbourne View, yet the patients there were a very mixed group of people. I contend that not only should those people not have been detained there, but many of them should not have been in Winterbourne View at all. It was quite inappropriate.
Only last week I attended an autism conference in Harrogate, where 39 Essex Chambers gave an interesting and profound presentation on the code of practice for the Mental Health Act. It is extremely relevant to the work that the Law Commission now intends to undertake, and I shall share a little of it with the House. Looking at the Mental Health Act code of practice as it now stands, on the question of avoiding detention at all, as 39 Essex Chambers advised us:
“Learning disabilities and autism share few features with the serious mental illnesses that are the most common reason for using the Act, and so consideration should be given to whether detention of a person with learning disability or autism is appropriate.
Hospitals are not homes, and most support for people with a learning disability or autism should be provided in a local community setting.
Detaining a person with learning disabilities or autism under the Act because there is no treatment available for them in the community is not a substitute for appropriate commissioning of care”.
One of the shocking features of Winterbourne View and other institutions—it was not unique—is that not only are people placed in them for the wrong clinical reason, but they are a long way away from their relatives or carers, who do not have access to them and are very often rebuffed. As a Member of Parliament for 18 years, with an interest in autism and dealing with many cases around the country of people on the autism spectrum being inappropriately detained, I cannot count the number of mothers—it seemed to be mothers in particular—who spoke to me about going to a hospital or home where their adult children were detained, only to be told, “We don’t think it appropriate for you to visit them, because it upsets them whenever you come”. Of course it does. If one of us were detained, clearly for the wrong reasons, and somebody close to us came to visit, I think that we would all be pretty emotional and upset. Yet that is used as an excuse to keep family and carers away, when they have an insight into that how that person functions, and could easily contribute to making the right decisions—the best interest decisions—on what the next steps for that person should be.
I had a recent conversation with a consultant forensic psychiatrist who expressed concern about the fact that although the Government are trying hard to move people out of institutions where they have been detained inappropriately, some of the decisions on moving them, and where to move them to, are not personally focused on the individual patient. “Best interests” are about the individual and the particular decision being made, yet that consultant said that in the present haste to get people out of institutions and into the community—something that we would all support—the methodology being employed means that decisions are often taken by people who have never even met the person concerned. One cannot say that such decisions will be best interest decisions.
I ask the Minister: can we have a parallel system running between now and when the Law Commission report comes in? For existing patients who need appropriate packages of care—people who need to be moved and have their liberty restored—much more attention would be paid to the way in which they are assessed, who does the assessment and, in particular, what the services and care packages are like where they are being moved to. It is not enough simply to tick a box and move them out. Many people who have been inappropriately detained have been medicated in detention—again, I would say, inappropriately—so there is a need for a great deal of expertise in the community in relation to the packages provided for those people.
I welcome what my noble friend and the rest of the Government are going to do, and I welcome the Law Commission report. But I say to my noble friend that they cannot afford to be complacent in this area. This has gone on for far too long.
My Lords, this important report shows that the laudable principles of the Mental Capacity Act have clearly not been realised as was hoped. I will focus on a few failures of the rollout in routine NHS care, particularly in relation to advance decisions to refuse treatment, advance statements of wishes and the issues around best interest decisions. I have a Question for Short Debate on DoLS next week, which this debate will inform.
The Government’s response and Box 1 of the excellent post-legislative scrutiny report both highlight the underlying principles for the purposes of the Act. They are clearly written, and when the Bill was going through this House they seemed clear. However, misunderstandings have continued, with a failure to acknowledge that mental capacity is decision and time specific, and frequently fluctuates in those who are seriously ill and undergoing treatment. Indeed, even small doses of commonly taken medication can sometimes alter and distort a person’s thinking.
One difficulty is that healthcare professionals are not trained to assess capacity over time. There is a risk-averse culture across the NHS, which leads staff such as nurses and social workers in particular to be fearful of assessing capacity in case their decision is subsequently tested or challenged. It becomes easier to delay or defer or say that it is somebody else’s responsibility, even though the Act very clearly states that the healthcare or social care professional with the patient should consider and act to enhance capacity for the particular decision to be taken.
Why have expectations not been met? Perhaps it is partly through failure to deliver effective training. I have been involved in teaching medical postgraduates about the Mental Capacity Act and participated in training programmes run by others for health and social care professionals. I have been repeatedly struck by the ability of trainers to make this ever more complicated. Then the principle of empowerment of the individual becomes lost, as risk-averse staff excessively focus on process and on the duty to protect. We know from other aspects of healthcare that simple messages are effective, while complex messages create muddle, yet many of these training programmes seem inordinately complex. Trainees often seem to have a patchy understanding of the principles and keep searching for a tick-box type of framework, because they are risk averse; the culture around risk aversion has sapped their confidence in their own ability to assess, and they hesitate to enable others to meet the patient’s needs and wishes, particularly when these may seem unusual or could be classified as possibly a competent but unwise decision. The requirement to take all practical steps to help a person to take a decision are often inadequately attended to, so someone is labelled as lacking capacity when the decision could be deferred until acute delirium is resolved, for example, and even a hearing aid repaired.
I turn to the issue of advance decisions to refuse treatment. The terminology is indeed confusing, as the report highlights. The term “advance directives” is dangerous, because a person cannot direct somebody to do something to them at some time in future should they lose capacity. For example, a person with cancer cannot direct that they will have radiotherapy or neurosurgery in the event of getting a brain metastasis, but they may state in advance of the event of that happening they would not want surgery or another specific treatment. In other words, they can refuse treatment in advance. Perhaps the shorthand should be “advance refusals”, not the misleading terminology of “advance directives” or “living wills”, or whatever.
The principle of an advance refusal underpins “Do not attempt cardiopulmonary resuscitation” and also can underpin good care planning. A person may not want CPR, but simply to say “Do not attempt resuscitation” cannot be considered valid, because it is so non-specific that the clinicians cannot be held by law to withhold absolutely everything unless the documentation states what that absolutely everything is. Is it fluids in the event of dehydration, blood in the event of a massive haemorrhage, or antibiotics in the event of sepsis, and so on? All are resuscitative measures.
In Wales, our new national DNACPR policy will ensure that the patient has a copy of the form and that one form is used across all care settings, in line with the spirit of enforceable advance decisions to refuse treatment. An advance refusal must also be included in the electronic patient record as part of their care plan and must be available to everyone in hours and out of hours who might be involved in a patient decision. For example, an ambulance crew must know of a DNACPR decision when they are on their way to respond to a call. That is how it will be possible to avoid the distressing situation when an ambulance crew feels that it has to attempt CPR while the family are objecting.
Many people are fearful of heroic measures being undertaken in the event of them collapsing in the street, and I have explored whether a medic-alert bracelet or pendant might be a way of a person carrying their DNACPR policy with them. However, until its validity can be assured, there is little appetite for this idea. Advance statements of wishes were included in the Act, thanks to the tireless efforts of the noble Baroness, Lady Barker, who is speaking after me. She rightly argued for equipoise around advance decisions, and it is these advance statements of wishes that have formed the basis of good individualised care plans.
In my closing time, I want to deal with best interest decisions, which are poorly understood. As the report highlights, there is confusion between best interest decisions and clinical decisions; families do not understand why they are not a proxy decision-maker automatically, particularly as they will be asked to consent to organ donation, for example, after a person’s death. It is striking how often families want more intervention and treatment, not less, when end-of-life decisions have to be made, and how many times they have a complete misunderstanding of what is going on.
One difficulty often for patients and their families is lack of clarity over who exactly is in charge of care—in other words, which clinician at the end of the day takes the decision. I hope the initiative of the Royal College of Physicians of having the consultant’s name over the bed will help deal with this. It is important for all the disciplines in the clinical team to recognise that, ultimately, that one consultant will carry the can when a best interest decision has to be made and will be answerable for it.
As my colleague, Dr Regnard, who gave evidence to the committee, argued, a central role of this Act is when decision-making must determine best interests, as distinct from best clinical practice judgments. A best interest decision must be in the interests of that person and, when in doubt, there is a principle of default to life. Indeed, when somebody is dead they are no longer a person. Death is inevitable for us all, but as a corpse we have no personal interests. It was because of the anxiety over what happens if somebody is brought into an emergency department, and their family, or another person, come in waving an advance decision to refuse treatment and the inability to determine its validity, that we felt when the legislation was going through that the ultimate default to life was the safest option.
There is ongoing tension between safeguarding and empowering. There is an ongoing tension between confidentiality and openly discussing issues with people important to the person who has lost capacity for one or more decisions. I would suggest that we need to roll out clear straightforward messages across health and social care if we are to clear the current fog that surrounds this well intentioned and laudable piece of 2005 legislation.
My Lords, I too was a member of the committee and I wish to thank the staff who assisted us in our deliberations. I really want to thank the noble and learned Lord, Lord Hardie, whose chairmanship was outstanding. I also want to put on record our thanks to Hammersmith and Fulham Mencap. The Minister and the noble and learned Lord, Lord Hardie, and I spent a memorable morning with Hammersmith and Fulham Mencap.
On my shelves I have what has now become something of an artefact. It is the code of practice from the original passing of the Act in 2005. There are not very many hard copies of that remaining. The visit to Hammersmith and Fulham reminded me, in ways that I needed to hear, that much though we had been through a deliberative process of determining ethical principles and standards, what we passed in that legislation was dramatically important to individual people who lacked capacity.
It was almost inevitable that legislation that was founded on principles which include a presumption that every individual has capacity and that individuals retain the right to make what may be seen as eccentric or unwise decisions was always going to be difficult to implement. I think that we in this House, at the time we did that, knew that the need for this legislation would only grow. Not only do we have a growing number of people with learning disability, but we also have a growing number of people with dementia. What we found, as the noble and learned Lord, Lord Hardie, set out so eloquently in his introduction to this report, was that the implementation of this Bill has been patchy. What I think does not perhaps come through clearly enough from our report is that where there were outstanding examples of good implementation of the report it was often down to the lone efforts of an individual practitioner—quite often on the front line. Some of the poorest practice was institutional and some of the institutions that are not implementing this legislation as issued are the very ones to which it was directed.
I am disappointed that the Government did not take up our suggestion that there should be an independent forum. The suggestion was put forward in light of the experience of the noble Baroness, Lady Shephard, as part of the Mental Health Act Commission that was set up after the passage of the Mental Health Act in 1983. That legislation has been implemented well. The professions have a clear understanding of what their obligations are and the implementation is and was closely monitored by Mental Health Act commissioners. That is why we made our recommendation.
I share the widespread reservations about the proposed mental capacity forum. I do not see how it will have the power or capacity to challenge some of the deep-seated resistance there is, not least among professionals, to the implementation of the law. I challenge the Minister to publish transparent information about the forum so that it is accessible to all who wish to apply to be on it and to ensure that it comes into existence in time for the forthcoming consultation by the Law Commission on the important matter of DoLS. I do not wish to talk about DoLS today. The noble Baroness, Lady Browning, and the noble and learned Lord, Lord Hardie, indicated the importance of that subject. I would simply say that although we were dedicated as a group, and we had great expertise at our fingertips on the Select Committee, we only began to scratch the surface of the issue. We did not, for example, consider what happens to specific groups of people who are deprived of their liberty, such as young people as opposed to old people, and in different settings. There is need for greater research.
I wish to focus on one or two parts of our report that might otherwise go unmentioned. Section 44 of the Mental Capacity Act deals with the criminal law provisions where a person who has care of someone who lacks capacity is guilty of neglect or ill treatment. Very few cases have been brought under Section 44. In fact, there were 85 cases in 2012, of which 36 were found guilty. We are talking about an Act that applies potentially to 2 million people. Solicitors and barristers who, by nature, are people not given to bold statements told us in terms that Section 44, as currently written, is thoroughly deficient. We were greatly assisted by colleagues from the Law Society of Scotland, who pointed out that under the Adults with Incapacity (Scotland) Act 2000 there is no need to establish whether someone had capacity or whether the perpetrator of an act knew that the person had incapacity in order to determine that a crime had taken place. I therefore find myself in agreement with those who said that Section 44 needs to be changed as a matter of urgency. If a crime is perpetrated against someone, it matters not one jot whether the perpetrator knew that they lacked capacity.
On the matter of professionals, professional bodies and their implementation of the Mental Capacity Act, chapter 4 of the report is hard hitting, and rightly so. I say to people who think that we are being unduly hard, particularly on the medical profession, that they really should go and look at the evidence provided to us in writing and orally by bodies such as the Royal College of General Practitioners. I understand the point that the noble Baroness, Lady Finlay, was making and it is true that this legislation has a disproportionate bearing on different parts of the medical profession. The bearing that it has on an A&E practitioner is different from the way in which it is likely to impact on the professional judgment of a psychiatrist. None the less, the medical profession as a whole has to come to some agreement on, and have some consistency about, the way in which it applies this law. It was not good enough for the Royal College of General Practitioners to say to us that GPs would not routinely spend time with patients making advance statements because it is “not part of” the GP contract. Well, it is the law. I have to say that I had a great deal of sympathy with the Royal College of General Practitioners when it said that it did not understand what the status of such a document would be and how it would be viewed by other people in other parts of the NHS. It seems to me that the noble Baroness, Lady Finlay, is right. There is a need for consistency across the NHS.
Our visit to the Court of Protection was truly impressive. I am very glad that the Court of Protection is going to get more staff and that the process of making an application to it has become a great deal easier. We passed a great piece of legislation in 2005 but we need to increase the quality of the monitoring and evaluation of its implementation across government.
My Lords, this is a most distinguished and impressive report and I respectfully congratulate my noble and learned friend Lord Hardie and others who contributed, many of whom are speaking in this debate. I confine myself, as did the noble Baroness, Lady Browning, to the second of the key recommendations, which concerns deprivation of liberty. More particularly, I want to deal with this in the context of last year’s Supreme Court judgment in the two cases that came to it on appeal.
As my noble and learned friend Lord Hardie has noted, the Select Committee’s report was published just six days before the Supreme Court judgment came out in March. The judgment, therefore, was not considered by the committee but is referred to in the Government’s response of June last year, although—I shall come back to this—it should be regarded as giving altogether greater impetus and urgency to the committee’s report than the Government seem to have recognised.
It may be helpful if I make one or two preliminary observations about the Supreme Court’s judgment. I am conscious of next Monday’s QSD on this from the noble Baroness, Lady Finlay, but—alas—I shall probably not be able to take part in that debate. The judgment, however, is also highly relevant to today’s debate. The court consisted of seven justices and split four to three. The two cases before it both arose out of community care orders for mentally incapacitated persons placed variously with a foster mother, in a specialist home for adolescents, and in a house with live-in carers. The question in each case was whether the various restrictions on their movements involved a deprivation of liberty within the meaning of Article 5 of the European Convention on Human Rights, because the MCA provides that the deprivation of liberty under the Act has the same meaning as in Article 5.1.
The question, therefore, necessarily fell to be determined by reference to the jurisprudence of the Strasbourg court. It being agreed by all seven justices that the Strasbourg court had never yet had to deal with the particular situation arising in those two cases, the critical question was which way the justices felt Strasbourg would decide it. The 4:3 split was on the answer to that question. I decline to say which way I might have resolved it—it is irrelevant, and I did not hear all the arguments—but suffice to say that it was, in any view, a borderline decision. There was a large measure of agreement between all seven justices.
It can fairly be said that the facts of those three cases represent about the furthermost examples of what the English courts—and the Strasbourg court—would conclude involves a deprivation of liberty. Not only were the dissenting judgments themselves powerful but their approach agreed with that of the six judges in the two courts of appeal to which the appeals came, who included Lord Justice Wilson, now a Supreme Court justice, and Lord Justice Munby, now President of the Family Division. That said, the Supreme Court judgment clearly establishes that very many more authorisations of deprivation of liberty are required under the MCA than had previously been appreciated.
Of course, these authorisations are in two distinct categories. There are those concerning people detained in hospitals and care homes requiring DoL authorisation under Schedule A1 procedures; and there are those for people before the Supreme Court detained in community settings, such as supported living and shared lives schemes, whose placements require authorisation under Section 16 by the Court of Protection. The DoL system has no present application at all to the second category.
The leading judgment for the majority in the Supreme Court was given by the noble and learned Baroness, Lady Hale, who herself observed that the safeguards for these cases appear “of bewildering complexity”. She recognised that those responsible for deciding whether a case indeed involves deprivation of liberty may,
“baulk at the bureaucracy of the procedures and the time they take”.
The BMA has said:
“The primary concern with the DOLs is their complexity and bureaucracy”.
In an earlier case, Mr Justice Charles, experienced in this field, described writing a judgment about these schedules as feeling,
“as if you have been in a washing machine and spin dryer”.
The Care Quality Commission report of 2 February this year, while welcoming the clarity provided by the Supreme Court’s decision, points to the huge increase in the number of requests for authorisation: in the case of requests from hospitals and care homes, eight times the number—my noble and learned friend Lord Hardie mentioned an increase from 13,000 to 90,000—and a climb also in respect of requests for community settings. The CQC report notes that at the end of September last year there were more than 19,000 applications outstanding compared with 359 at the end of 2013-14.
Against that background, the Select Committee’s recommendations surely assume yet greater importance and urgency, and one wonders whether the response has been sufficiently positive. It is true that the response at paragraph 7.21 states that by the end of November 2014 a new set of DoLS forms would be created. I simply do not know whether they have or have not been. It is true, too, that in the next paragraph the response states that there is a commitment to publish legal guidance on this topic by the end of 2014. Again, I do not know whether that did or did not happen but, frankly, it would not have been very difficult.
The Supreme Court judgment makes it clear that the essential test is whether the person is under continuous supervision and control and not free to leave, although that is always to be regarded as a question of fact and degree, depending on the person’s actual situation. As I have already said, I believe that the judgment marks the extreme limits of what is to be regarded as deprivation of liberty. It seems to me important, too, to recognise that the judgments are focused on long-term placements and not, as I suggest, on a terminal or emergency situation. After all, the policy that underlay the court’s decision was as follows, and I quote from paragraph 57 of the judgment from the noble and learned Baroness, Lady Hale. She said that these people,
“need a periodic independent check on whether the arrangements made for them are in their best interests. Such checks need not be as elaborate as those currently provided for in the Court of Protection or in the Deprivation of Liberty safeguards (which could in due course be simplified and extended to placements outside hospitals and care homes)”.
That said, recognising that the most pressing problem now appears to be community care arrangements, including supported living, the Government have, as we have heard, asked the Law Commission to draft a new legal framework for authorising those cases as well as for DoLS. However, that, they acknowledge, will not be complete “for a few years”. I think that we were told by my noble and learned friend Lord Hardie that it would be the summer of 2017. In the mean time, all that is offered is possible minor adjustments to the DoLS code of practice, if that is suggested by a task group led by ADASS, the Association of Directors of Adult Social Services. But as the passage that I have just cited from the judgment of the noble and learned Baroness, Lady Hale, suggests, is not perhaps the better approach that, as soon as possible, the DoLS,
“be simplified and extended to placements outside hospitals and care homes”?
I urge the Minister to address these urgent questions.
My Lords, the Government are right in their response to insist that the Mental Capacity Act is innovative, in that at the heart of the Act lies the so-called empowerment ethic. This is entailed in principle (3) of the Act, which states:
“A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success”.
This suggests that it is recognised that mental capacity, as my noble friend Lady Finlay said, is fluctuating and depends on when the person is being assessed. But when the time comes that a decision has to be made on a person’s behalf, then principle (5) comes into operation—namely, that the decision must be made “in his best interests”. Here, like my noble friend Lady Finlay, I find the troubles really begin.
The Government apparently agreed with the committee that more social workers principally—but other people as well—needed to be trained to be assessors of best interest. Of course, this is very difficult because, even with the best training in the world, to make a determination of somebody’s best interest is to make a value judgment; and whatever the training, it remains true that the values of the person making the determination of best interest may be different from those of the person whose interest is in question. For example, it is perfectly possible that the person who is the trained assessor of best interest may think that it is always, or nearly always, in the best interest of a patient who is incompetent to stay alive. On the other hand, the patient himself, if he had been able to make a decision, may have disagreed with that and may have preferred to be allowed to die sooner rather than to live on in a state of incapacity, humiliation, distress and, of course, pain.
It cannot be overemphasised how slippery and evasive the idea of best interest actually is, and lawyers have long disputed—certainly since the Bland case, and probably before—what actually counts as best interest and whether, in the case of Bland, for example, he could be said to have had any interest at all, being in a permanent vegetative state. This is a huge difficulty that really cannot be brushed aside. We need more trained people. The notion of best interest must be addressed in a different way. This is what makes the question of advance decisions—although I infinitely prefer the new title that my noble friend suggested—a matter of enormous importance. Therefore, the question of so-called advance directives is central to the interpretation of the Act and what the Government propose next to do.
It is not only the public at large who are ignorant of, and therefore careless of, making such advance directives but, disgracefully, the medical profession and other professionals who will be involved with people trying to make such decisions. It is also true that these professionals, including doctors, are unwilling to discuss any such matter. I remember the acute embarrassment of my own then GP when I asked him to keep a copy of the living will, as it was then called, that I had made. He did not want to think about it.
In their response the Government were right to say that the royal colleges have a great part to play, particularly the Royal College of General Practitioners. The college will not like being told what it ought to do, but it has a duty to influence all GPs to keep in their surgeries information about how to make such an advance decision. This is genuinely a matter of urgency because, whatever the status is thought to be of an advance decision, it must be taken into account, at the very least, if it has been made properly, if it seems to be applicable and, most important, if it is known at the time of the patient’s deterioration, or first entry into hospital or care home, that he or she has made such a decision.
This is part of the difficulty. There must be an easily accessible register which shows who has or has not made such a decision. As my noble friend suggested, there must of course be a way in which the person, whatever his capacity, can show that he has made such a decision. Therefore one needs something like a donor card or a bracelet that he can wear to say that he genuinely has made such a decision. This will have to be formalised so that it is known to be genuine, and this will be backed up by the register. These matters are of enormous importance because the question of the early, well formed wishes of the person under consideration must be taken into account. After all, this is the heart of the Mental Capacity Act.
It is a rather fiddly little reform that must be taken and GPs are, whether they like it or not, at the heart of it. After all, their surgeries are absolutely stuffed with leaflets and instructions about what to do if you have got diabetes or a mad mother and so on, but not anything about how to record your wishes about your own care and your own decision to refuse treatment in certain circumstances. There is nothing about that at all and I honestly believe that most people do not know that they have, first, a right to refuse treatment and, secondly, that there is a way of making this known. This is the most important issue that the Government must address through general practitioners.
I entirely support what my noble and learned friend Lord Hardie said about the disappointment that it seems that only a forum will be set up. The word “forum” sends shivers down my spine because it means nothing except a talking shop with no powers that will finally wither away out of alienation and boredom.
I listened with great interest to what the noble Baroness said. Will she clarify whether she agrees with me that a so-called best interest decision that leaves a patient in pain and distress is actually not a valid best interest decision because it is not in the interests of the person to be left in pain and distress? That decision would, therefore, be open to challenge?
My Lords, when I took my place in the Chamber, it occurred to me that I did not really want to speak in this debate at all. I only wanted to listen. I was right to have that thought because there is actually very little left to say—certainly for me to say—near the end of what has already been an absolutely excellent debate with some more still to come. Noble Lords with far greater expertise and experience than I could ever lay claim to have covered the water-front comprehensively. So I shall speak briefly to support but—noble Lords will be relieved to hear—not to repeat everything that has been said and to make one small plea of my own.
I was a member of the Select Committee so ably led by the noble and learned Lord, Lord Hardie. He has set out the committee’s stall with consummate skill, as those of us who served with him would have expected. I thank him, my colleagues on the committee and the immensely dedicated and hard-working team who supported us. I learned a vast amount from all of them and, of course, from the many people who supplied us with evidence. It was genuinely a privilege to be part of such an important inquiry. Everything that has been said so far demonstrates how much we have moved on from the very early days when a mental capacity Act was in contemplation.
As we have already heard, the Mental Capacity Act is a rare piece of legislation in that almost nobody has a bad word to say for it in principle. I am proud that it was introduced by the last Government. Along with the noble Baroness, Lady Barker, I am proud to have served, more than a decade ago, on the pre-legislative scrutiny committee which recommended a number of improvements to the original Bill. Those included, significantly, that its name be changed from the mental incapacity Bill to the Mental Capacity Bill. It was a critical decision because it emphasised the Bill’s intentions to focus not only on protecting those without capacity but also on what people with limited capacity could, with support, decide for themselves, rather than on what they could not. We have heard a great deal from various eminent noble Lords about the issue of best interest and how that is to be decided, for people who have some capacity as well as for people who have none. The resulting Act, which went on to the statute book in 2005, is widely felt to be essentially benign, founded on those five core principles about which we have heard a lot in this debate.
As has also been said, difficulties arise from failures of implementation and/or compliance with the Act which, in turn, derive from two main issues. One is imperfect understanding—among professionals and non-professionals—of how the Act should be applied in practice, including the kinds of formulaic and risk-averse behaviour so clearly described by the noble Baroness, Lady Finlay. The second is limited resources within the health and care sectors and more widely. The specific problems with DoLS have been well described, and are, we now understand, being addressed through a Law Commission review, with some additional measures to improve matters in the short term. These are welcome. Indeed, the Minister has given us all a preview of the speech we can expect from him by providing a helpful update on how the Government are taking forward each of the recommendations made by the Select Committee. It is gratifying to see how frequently the word “accept” appears throughout this document. However, the point made by the noble and learned Lord, Lord Hardie, is forcefully made and undeniable.
We also know, having had the benefit of his presence as a member of the committee before he entered Valhalla, that the Minister himself is well seized of the issues and committed to making progress, but it is hard not to be anxious about how many of these good intentions may fall by the wayside on the other side of the election, no matter who is in government. I hope that we will hear some reassuring words on that subject both from the Minister and from my noble friend on the Opposition Front Bench, whom I hope of course to see ascending to Valhalla himself soon after 7 May, but that is another story.
I should like to take a moment before I sit down just to mention the issue I referred to at the beginning of my speech, which is that of lasting powers of attorney, and which I do not think has yet been touched on by anyone else. The committee heard evidence suggesting that,
“awareness of LPAs among the general population was low, and that access to good quality information was not always readily available. Not many people were aware of the two types of LPA, covering property and financial affairs on the one hand and health and wellbeing on the other”.
The committee also observed that:
“Witnesses expressed concern regarding the complexity of the forms and cost of registering an LPA. The paperwork was considered onerous and the assistance of a solicitor was often sought; this added to the burden of costs”.
I know that efforts are being made on both of these issues, but my own recent experience, which I will share very briefly with the House, bears out the evidence.
When we were coming to the point of producing the report, it was borne in on me very forcefully that a lasting power of attorney was something that everyone ought to have, particularly as they move into their—shall we say—later years. The reason it struck me so forcefully was that we had spent an enormous amount of time in the committee talking about people who are declining into diminished capacity through progressive disease of one kind or another such as dementia, or those who suffer from learning disabilities which impair their capacity. What we did not talk about a great deal, although it has been mentioned in the debate, particularly by the noble Baroness, Lady Finlay, is the sudden loss of capacity that comes from an accident or catastrophic brain injury, through which one can be translated in a moment from full capacity to no capacity. I thought that it was something that could happen to anyone, so I had better trot along to my solicitor and get myself a lasting power of attorney set up. I got a good way down the line, but I have to say that I did find the process extremely off-putting. I do not mean that my solicitor was anything other than kind and supportive, but the amount of paper that had to be waded through, of consultation that needed to be done and of signing up needed on the part of the people who were to be registered as deputies under the LPA was such that—I am sorry and ashamed to say—I gave up. I still have not done it, and that is not good for me and it is not good for all the rest of us who have not done it. Allowing for all the necessary safeguards to protect against the misuse of LPAs, which I perfectly understand, can the Minister say what more could be done to encourage their uptake? I think that they will become increasingly important.
The Mental Capacity Act was and remains an enlightened piece of legislation which will become increasingly necessary and significant as more people live on with impaired capacity. It has already done good in the world and will do more, provided that it is understood and supported so that it can operate as it should. I hope that the Minister will take seriously the challenge from the noble and learned Lord, Lord Hardie, to think again about the Government’s decision not to implement recommendation 3. Doing so would be the best way to provide that support.
My Lords, I refer to my interests in the register. As a member of the committee I should like to add my thanks to my noble and learned friend Lord Hardie for his chairmanship and to the staff who supported us. The committee’s report hoped to raise the profile of the Mental Capacity Act, to stimulate further discussion and, most importantly, to encourage action.
One of the fundamental problems with the Act, however, is the way that it brings together DoLS with some very important empowering measures. In the Government’s response and a number of other reports—including the Green Paper consultation published last Friday, No Voice Unheard, No Right Ignored, which is about people with learning disabilities, autism and mental health conditions—these two aspects of the Mental Capacity Act confuse everybody. It is difficult to discuss them both in the same debate. For that reason, I welcome the debate on DoLS arranged by my noble friend Lady Finlay for next Monday. I will therefore say no more about DoLS today.
The Government commissioned a Mental Capacity Act directory, which was launched in February by the Social Care Institute for Excellence. It endeavoured to bring together some of the resources relating to the Mental Capacity Act in one place, sorted by different professional groups. However, what about the people most affected by the Mental Capacity Act: the people who lack or have fluctuating capacity? What resources are there for them? I only found one easy-read document suitable for people with limited literacy. There may have been more, but this one was found by navigating a very difficult process of links. The document provided an explanation of their rights under the Act. It was not a resource to facilitate decision-making. The examples given were mainly about very straightforward daily living activities, with very little reference to health-related decisions. Given concerns about the lack of choices for, and the lack of involvement of, families in hospitals such as Winterbourne View, this seems quite extraordinary. As a response to recommendation 12, considering the specific information needs of the different groups affected by the Mental Capacity Act, the directory needs much more work. Surely the people most affected by the Act are vulnerable adults, such as those with learning disabilities. So far, the directory further reinforces an unintended message, I am sure, that the Mental Capacity Act is a professional framework rather than an empowering piece of legislation.
Increased activity around the Act means little until it translates into change for individuals and families on the ground. Charitable organisations continue to hear from families about organisational failures to understand the Act and apply it correctly. The lack of an independent oversight body will allow such inadequacies to be perpetuated. Charities such as the Royal Mencap Society and the Challenging Behaviour Foundation have highlighted that, a year on from the Select Committee’s report, there is little evidence that things have changed from the perspective of individuals and families. Frustratingly, families continue to report being excluded from best interest decisions.
I will illustrate my point with two case studies. The first is the case of Angela. She is the mother of two young adults, both with learning disabilities and autism. She has become so frustrated by being left out of decision-making by professionals from children’s services and adult services that she feels that her only way of ensuring her involvement is by becoming their health and welfare deputy. This requires an application to the Court of Protection for permission, first of all, to ensure that she qualifies. Then she has to submit a full application, including a capacity assessment of her children by a medical professional. A court hearing may be required to make the final decision, and all this takes time. The application incurs a fee of up to £1,000 per child, with an annual subscription of between £35 and £320. There is no guarantee that she will be appointed deputy. Some carers could not afford even to begin this process. She told Mencap:
“I love my children and know them better than anyone else and yet professionals do not always involve me in decisions. This causes me real anxiety, as they have complex health needs and if their needs are not understood and met properly, this could have serious consequences. I have been told that professionals should involve me—that under the Mental Capacity Act they must—but I have no confidence that this will happen unless I am an appointed deputy”.
The second example is about Botton Village. It is an intentional community where, until recently, all residents and co-workers lived alongside each other as equals, sharing a home. It is said that:
“Residents feel needed, valued and respected and it shows”.
The umbrella term used by social services would be “shared lives”. However, the model is under threat, with a division being made between those who are considered carers or staff and those being cared for. It appears that financial decisions are driving change without the inclusion of residents in best interest decisions about the future direction of their lives, with many relatives of people who live there being gravely concerned that this loving and inclusive community will be lost, without their individual voices being listened to.
It appears that, after an inspection, Camphill Village Trust, which owns this community, made the decision to change it from a community or family-based organisation to a commercial/institutional model, which the families have perceived as being to the detriment of the inhabitants of Botton Village. In the words of the Welfare Reform Trust, “When did care become a business?”.
The intentions of the Mental Capacity Act are not to create an additional layer of bureaucracy and regulation that takes away people’s rights; it is supposed to enhance their rights. I draw particular attention to the more than 1 million people in England living with a learning disability. This is nearly double the number living with dementia, and yet we often think about people with learning disabilities as being a very small group. The point is that a learning disability, by its very nature, is not time limited and will be present their whole lives.
It seems to me that a large problem with the failure to implement the Act is an attitudinal one—a paternalistic attitude which has not passed despite the decade since the Act was passed. Most of these people will lack capacity to make certain decisions at some point in their lives, which may well include decisions about seeking healthcare. We know that premature mortality is commonplace and that the attitudes and skills of healthcare staff are often at fault. GPs are a particular focus for embedded training as they are usually at the forefront of health surveillance and of accessing further investigation for their patients. They are also more likely to know the family and more willing to ask their advice, for example on how best to support their relative to understand decisions about them, as well as to understand that they need to inform their patient when they are going to consult other family members.
I am encouraged by the response of the Royal College of General Practitioners to the report on trying to embed the Mental Capacity Act in the curriculum for GPs and in the college’s media communications. It would be very helpful if the Minister could comment on how the Government plan to monitor the progress of organisations such as the RCGP, the GMC and NHS England in achieving some of the goals set out in the committee’s report and in the Government’s response.
I end by reminding noble Lords that capacity affects many aspects of decision-making. With pending elections, it is perhaps particularly pertinent to consider the decision to vote. A survey carried out by Mencap at the beginning of this year of 553 people with a learning disability found that 17% had been turned away from a polling station. Again, one cause is almost certainly attitudinal, and the charity continues to hear accounts of those working within electoral services and, indeed, of candidates themselves making assumptions about people’s capacity to vote.
The Learning Disability Alliance has arranged a citizens’ jury on 2 April this year and invited representatives from each of the major political parties to speak on policy issues that may affect people with learning disabilities in order to enable them and their families to make informed voting choices, recognising that there is nothing that says you have to have any particular capacity to vote.
My Lords, this is one of those perhaps rare occasions on which we debate a significant issue in a manner transcending the usual political perspectives which, perfectly properly, often characterise our proceedings. I am grateful to the noble and learned Lord and the four members of his committee who have spoken today, but mention particularly the noble Baroness, Lady Warnock, who I understand has given notice of her intention to retire from the House on 1 June. Her contribution today was interesting, as always, and the whole House will in due course want to pay tribute to the very significant contribution she has made to our proceedings over very many years.
As we have heard, and as the Select Committee itself proclaimed, the 2005 Act was both important and visionary, and it commanded support not only across the political spectrum but from a wide range of interests, both professional and among organisations and individuals concerned with the problems facing those suffering from mental health issues or learning disabilities impinging on their capacity to make decisions about their lives. It is clear that the potential of the Act is yet to be fully realised, as both the Select Committee report and the Government’s response confirmed.
A lesson that we as part of the legislature should perhaps learn is that post-legislative scrutiny in such sensitive areas of public policy should not be deferred for long periods. The committee report was published nearly nine years after the legislation was enacted. The Government responded with commendable expedition within four months. It has taken a further nine months for the House to have the opportunity to debate the matter. As the noble and learned Lord rightly pointed out, in this particular case, that may have been to the general advantage because the Government have responded and accepted a large number of the committee’s suggestions.
It was not any fault of the committee or, perhaps, the Government, that that time has been taken, but it is something that those responsible for the business of the House should consider. If post-legislative scrutiny is to be generally effective, it should surely be timely, arguably ranking somewhat higher among the priorities for debate—other, of course, than for legislation itself.
Having said that, I congratulate the noble and learned Lord the chairman and the committee members for a thorough and constructive analysis of what has happened and, perhaps more importantly, what has not happened, to fulfil the aspirations of the Act. I also welcome the helpful information supplied by the Minister describing what has been done in pursuance of the fairly long list of topics identified in the Government’s response. Items 32 and 34 of the information we received on Monday dealing with legal aid are disappointing. Reliance on the exceptional funding scheme, especially when we are considering this area of law and given the dismally low rate of successful applications under that scheme, is unacceptable.
Members with greater and longer knowledge of the topic than I could claim to possess have identified many of the areas of concern. I will not reiterate the matters that they have raised, but will emphasise some broad issues which need to be addressed if the intentions of the Act are to be fulfilled. My professional experience in this field of law as a solicitor was fairly limited, confined effectively to dealing with the Office of the Public Guardian and the Court of Protection in personal injury cases and in the area of wills and probate. I found both bodies difficult to deal with. There were long delays in dealing with both correspondence and process, failures to involve deputies—for example, under powers of attorney—or ensure timely visits to check on the position of patients led me at one stage to write to my noble and learned friend Lord Falconer about the problems that were being occasioned.
The move of staff to Nottingham seemed to precipitate a distinct deterioration in the service. In fairness, I gather that there has been a marked improvement in the performance of both bodies in the past two or three years, with correspondence and turnaround times for registration of lasting powers of attorney, for example, having been much improved, and the fees for the latter actually reduced. I mention the latter with some hesitation, lest the Lord Chancellor be tempted to consider full cost or more than full cost recovery in that respect.
The two main worrying areas identified by the committee and acknowledged by the Government are the failure to ensure that the aspirations of the Act are recognised not only by members of the public, including those suffering from incapacity, but, critically, by professional and other carers, including family and friends, and the important but discrete issue of deprivation of liberty safeguards.
As many have stressed, it is essential that the five principles of the Act, beginning with the assertion that capacity is to be assumed unless the contrary is established, and the other principles which flow from that starting point, be more widely understood and applied. It is clear that that objective has not yet been achieved. Moreover, it is also clear that it will often be achieved only if all the relevant partners and agencies are aware of their responsibilities and work effectively together. We are becoming increasingly aware as a society that increasing numbers of us are likely to need not just physical care but help when it becomes questionable whether we can make decisions for ourselves, and perhaps ultimately necessary for some to be made on our behalf. Nor is this something confined to the elderly; advances in medical science mean that younger people are living longer with conditions that impair their capacity than used to be the case. In this context, we need to ensure that there is effective cross-sectoral collaboration in planning and financing relevant support services, and oversight and evaluation of need and the effectiveness of provision. Thus far, the Care Quality Commission appears to have some way to go to achieve this but more is needed, too, from other agencies.
The first port of call will in many cases be the general practitioner, but hospitals, and NHS England generally, local government and the voluntary and community sector need to be jointly engaged. Within local government, this area cannot be confined to social care services as housing, leisure, public health and perhaps transport may well have a role. In two-tier areas, that will require collaboration between the county and district tiers. The police and emergency services also need to be alert to the issues so that they can, if necessary, refer cases to the appropriate agency.
Local oversight should take place within the health and well-being boards and the health scrutiny committees of councils. I declare my interest as a member of the relevant committee in Newcastle. The financial implications for local authorities in dealing with what will be a rising need will have to be examined. I will return to this aspect when I deal with the deprivation of liberty issue. I welcome the initiatives of the Local Government Association and the Association of Directors of Adult Social Services in developing a self-assessment tool and peer challenge for local authorities, along with a commissioning guide and the appointment and training of Mental Health Act leads in councils and the National Health Service.
I also welcome the Government’s decision to appoint a mental capacity advisory board to oversee and report annually on the implementation of the Act, at least pending the review to which the noble and learned Lord referred and which the Government are going to undertake. It may be that that initial step will be superseded by a return to the committee’s original proposal. I will certainly be interested to see how things develop over the next two or three years, while the Law Commission considers the matter, and whether the Government of the day keep an open mind as to an eventual outcome.
I hope, too, that the remit of any such body will extend to oversight of the Court of Protection and the Office of the Public Guardian in the exercise of their responsibilities, both to those suffering from a lack of capacity and those who assume responsibility for them. However, an understanding of the issues and knowledge about how they impact on individuals needs to extend well beyond the statutory services. Those who have to deal with people whose mental capacity is an issue need education, training and oversight in how they carry out their responsibilities—especially, perhaps, those dealing with the personal and financial affairs of clients who may have problems. Lawyers, accountants, banks, insurance companies and those engaged in financial services must also be equipped to recognise possible problems and be alert to the necessary responses.
Some Members of your Lordships’ House will have seen the briefing from Compassion in Dying, which identifies issues with advance decisions in relation to medical treatment and the need to reflect these in the training and support of professionals, volunteers and others concerned with end-of-life rights. A number of your Lordships have referred to that issue today.
Lastly, I turn to perhaps the most difficult and sensitive issue, that of the deprivation of liberty safeguards. As the report makes clear, this has been an area of great concern. Members may have seen the very troubling accounts of some cases supplied in briefings for this debate. The committee was critical of the way that the existing safeguards have been applied by the professionals whose responsibility it is to implement them, and sceptical about what it regarded as the low number of DoLS applications: just under 12,000, when there were 200,000 people with dementia living in care homes and only 1,600 authorisations in place at any one time. Witnesses suggested that thousands—perhaps tens of thousands—were being detained without the protection of the law and the means to challenge their deprivation. Their scepticism is borne out by the latest information provided by the Minister, and referred to by the noble and learned Lord, showing as many as 90,000 applications for the first nine months of 2014-15—a startling increase with potentially massive implications for resourcing in terms of process and services.
Mencap has reported continuing complaints from families excluded from best interest decisions. It is extremely disturbing that 55% of the 3,000 patients with learning disabilities in in-patient units experienced self-harm, accidents, assaults, restraint or seclusion last year. Can the Minister advise us on what progress is being made in involving families in best interest decisions, particularly in that category? What is being done to ensure that professionals involved in the transforming care programme are being equipped effectively to implement the Act?
The Supreme Court decision in the Cheshire case last year, about which we have heard, has led very properly to a significant increase in applications requiring assessment and the application of safeguards, the cost of which is estimated by the Local Government Association and the Association of Directors of Adult Social Services as £96.8 million a year more than the existing funding of £35.2 million. This is in effect a new burden and the Government need to bridge the gap.
Today I have received some disturbing information from Newcastle City Council, of which I am a member. Currently the council has received 847 requests, 696—that is 80% of them—from care homes and 151—the other 20%—from hospitals. The council estimates that the cost of dealing with these cases will amount to £1.2 million this year just for this authority. That has to be found from within the council’s own budget, which is already suffering a 48% cut. In the absence of government funding for this significant new need there is a clear risk of further cuts to already stretched services, and that will apply, I suspect, to many other local authorities. I hope that the matter can be addressed urgently by the relevant government departments—the Ministry of Justice, the Department of Health, and the Department for Communities and Local Government. Of course, I do not ask the Minister tonight to write any cheques, as it were, but the matter needs to be considered across the relevant government departments with some urgency. It is clear that demand is far outstripping what was originally envisaged.
The potential scale of the challenge is huge. Up to 670,000 people in England are living with dementia and are potential beneficiaries of the Act and over a million have learning disabilities, some at least of whom may also need its protection. We owe it as a society to ensure that they and their families and carers are properly supported, that their dignity and their interests are sustained, and that the intentions of the Act are realised. The committee’s report and the Government’s welcome response should facilitate this process and ensure that the situation is kept regularly under review and that these critical needs are met by society on behalf of those who are among the most vulnerable.
My Lords, I thank the noble and learned Lord, Lord Hardie, for securing this debate, albeit that it has taken a little time to get it to the Chamber.
The Mental Capacity Act is a positive piece of legislation. The noble Baroness, Lady McIntosh, is absolutely right: calling it “capacity” rather than “incapacity” was an important change. The legislation empowers and protects individuals, and has the potential to transform lives. The Government welcome the committee’s report and its recommendations.
Standing at the Dispatch Box, I am in the unusual position to be able to pay tribute, not just in formal but in practical terms, to the secretariat, the expert advice, and in particular all the evidence, oral and written, that was obtained and the various visits, including a memorable one referred to by my noble friend Lady Barker. All this contributed to the committee’s report. One thing that has emerged from the debate is just how difficult this subject is, and how it needs to be challenged and tackled in all sorts of different circumstances. There is no question of complacency on the Government’s part, as some noble Lords suggest.
Parliament showed considerable leadership in bringing forward the legislation to shape the way that individuals were treated. While I recognise what the committee has to say about implementation, we should not for a moment underestimate the complexity of the challenge involved in changing cultural attitudes towards mental capacity. I am glad that a number of noble Lords referred to the difficulty of assessment. The noble Baronesses, Lady Warnock and Lady Finlay, emphasised how mental capacity can fluctuate. Performing an adequate assessment is difficult. Instruction is variable, as we have found in the course of investigating this matter.
Changing attitudes is not as simple as a flick of a switch, especially when we consider the number of people in the healthcare and social care sectors whose roles are affected by the act, together with those in countless other sectors in society. While the Government, of course, bear an important responsibility, the principles of the Act are not solely a task for government. They require the support of everyone: those responsible for running services, professionals and the public. My department, the Department of Health and those organisations responsible for implementing the Act have worked together to bring life to the committee’s recommendations, but there is still a long way to go.
In my brief remarks, I shall focus on the two main recommendations of the report. Acting on a request received from the noble Lord, Lord Beecham, I have taken the opportunity to write to colleagues to provide an update on all the actions taken since the publication of the government response in June 2014. I hope that colleagues have found it useful and that they will note the considerable amount of work that has been undertaken over the past 12 months. That letter and the enclosures have been deposited in the Library, and I hope the House will forgive me if I do not go over all the answers in that letter but try to respond to some of the specific points that have been made during the debate.
I shall first deal with the national mental capacity forum. The committee recommended the implementation of a single independent body with responsibility for the implementation and monitoring of the Act. On 27 November 2014, it was announced that we would set up a national forum with an independent chair. I appreciate that this has been described by more than one noble Lord as a talking shop only. The Government are painfully aware that a talking shop is not enough. The purpose of the forum—and one should not be too affected by the name as it is what it does rather than what it is called that matters—is to inform the Government’s understanding and take the positive message of the Mental Capacity Act out to professionals and the public. The Mental Capacity Act implementation group will be a Department of Health and Ministry of Justice arm’s-length body and statutory agency. The chair of the forum will also be on the implementation group which will deliver what the forum has obtained by way of information and what is being disseminated. Ultimate responsibility will rest with the Department of Health and the Ministry of Justice which will oversee these matters at the highest level.
We hope to launch the recruitment process for the independent chair in the next few weeks and to have the chair in place by the summer. The chair will work with officials to agree the membership and composition of the forum, which we propose will meet for the first time in the autumn. We are anxious, for obvious reasons, to engage with as wide a range of stakeholders as possible. We envisage that there will be a large virtual network which will contribute to the work of the forum, but we will need a smaller core group of stakeholders, led by the independent chair, to co-ordinate the work and advise government. Enthusiasm for the national mental capacity forum is clear already. In the three months since it was announced, the Department of Health alone has received in excess of 50 applications for membership from a wide range of implementation bodies. We anticipate this to rise further over the coming months as we accelerate the formal recruitment, and we intend to launch the recruitment of the independent chair of this forum imminently. The terms of reference stress the need for a high-calibre individual who can bring together different organisations and focus on specific actions that will help support local implementation. We would be grateful if noble Lords— and a great deal of expertise was evidenced in the course of this debate—disseminated news of this advertisement to ensure that we attract distinguished applicants.
The aim and recommendations of the committee were clear. The aim and the aspiration of the Government are similar, although I accept that the recommendation does not tally precisely with that made by the committee. However, I assure the committee that great heed has been paid to what animated and lay behind that recommendation, and a great deal has been learnt from it.
On the deprivation of liberty safeguards, the committee made nine recommendations, including a comprehensive review of the legislation itself. The history of the matter is well known, and I do not need to repeat it now. The fact that the system did not work satisfactorily was, I think, evident to all those who had any part in the committee.
Members of the committee are, of course, aware—it has been discussed during the debate—that almost a week after the publication of the report, the Supreme Court issued the judgment in the Cheshire West case, which set out a clarified test for what constitutes a deprivation of liberty. The test is whether that individual lacks the mental capacity to consent to the arrangements for their care, and is under continuous control and supervision, and is not free to leave their place of residence. All three elements must be present. An individual’s compliance or objection is not relevant in judging whether a deprivation of liberty might exist.
This revised test means that significantly more individuals are now considered to be deprived of their liberty than were under previous practice. As a number of noble Lords have pointed out, the use of the safeguards is now considerably greater than when the House of Lords Select Committee looked at this matter. The Supreme Court judgment adds further weight to the Select Committee’s recommendation that the deprivation of liberty safeguards should be reviewed.
The Care Quality Commission report of 2 February 2015, which was included in the helpful briefing pack provided by the House of Lords Library, illustrates the significant increase in applications after the Supreme Court judgment. One of the reasons may be that the Supreme Court said that those in doubt should err on the side of caution in deciding to make such applications: that advice seems to have been very much heeded.
I am pleased to say that the Government have initiated a fundamental review by the Law Commission of the deprivation of liberty safeguards legislation. We expect its detailed consultation paper this summer. The Law Commission’s work will be completed in summer 2017, when it will present the Government with draft legislation. That may seem too slow for some people’s entirely understandable aspiration for there to be clarity in this area. However, I respectfully agree with the noble and learned Lord, Lord Hardie, that this must be got right. After all, it was not a perfect piece of legislation hitherto and there are a number of stakeholders to consult, so this process will inevitably take more time than ideally one might like.
The noble and learned Lord asked why the Government had delayed in setting up the forum. As we stated in the government response, the range of stakeholders was wide, and we have taken time to get, as we think, the governance structure right. As I have said, the independent chair will play a key role in this.
My noble friend Lady Browning asked about the use of the Mental Health Act in connection with learning disability. I agree wholeheartedly that the failings at Winterbourne View were completely unacceptable, and use of the Mental Capacity Act there was poor, if not non-existent. The Government strongly believe that better implementation of the Act will greatly reduce the likelihood of a future Winterbourne View situation. The noble Baroness may well be aware that the Department of Health has just launched a public consultation on increasing independence and improving care for those with learning disabilities, which specifically considers the use of the Mental Health Act.
My noble friend also spoke about a halfway house to cover vulnerable individuals before the Law Commission’s report. I sympathise with the view that these basic human rights must be protected: that is the matter of ensuring that a deprivation of liberty is in a person’s best interest. But we believe that one cannot take one group of individuals—for example, those with learning disabilities, although I accept that this is a lifelong condition and there are many, many of them in the population—and consider their rights in isolation. These are universal human rights, and if we are to have a future system to replace DoLS that works for everyone, we must afford the Law Commission time to consider all this in the round.
The noble Baroness, Lady Finlay, referred to advance decisions, including those recorded in electronic records. I agree that it is key that the NHS has systems in place to ensure that, when an advance decision or a lasting power of attorney exists, professionals can easily find such information. The Department of Health is progressing the steps to improve such information-sharing; for example, the MyNHS programme seeks to put patients’ information at their control and allow it to be shared with professionals. We believe that greater awareness of the relevance of advance decisions among professionals will go together with a better understanding of the Act itself.
My noble friend Lady Barker referred to the criticism that had been received of Section 44 as a criminal offence. I take her point and the reference to the opinion that it was not a particularly well drafted or useful provision. It is right to say that prosecutions have increased over time, however, and I believe that that does at least demonstrate an increased awareness among police and prosecutors of the nature of the offence, albeit that it may have limitations.
The noble and learned Lord, Lord Brown, helpfully told the House about the decision-making process in the Cheshire West case and effectively asked what was happening in the mean time, given that the Law Commission was going to take some time to produce the legislation. In the short term, we have taken steps to simplify the existing process as much as possible. We have funded a review of the existing DoLS forms by the ADASS. That resulted in a reduction in the number of forms from 32 to 13, which will reduce the bureaucratic burden on providers and local authorities. We have also requested comprehensive guidance as to what constitutes a deprivation of liberty from the Law Society, which is due. We have also issued DoLS guidance notes, which have been well received by the field; and a new streamlined court process, together with new court forms for DoLS cases, was introduced in November. The case law guidance is in its final stages of preparation and will be published by the end of this month. We have extended the scope of the guidance to cover acute hospital settings, A&E, care homes, hospices and community settings.
The noble Baroness, Lady McIntosh, asked what was being done to increase knowledge of lasting powers of attorney, and told the House about some of the difficulties that she had confronted when seeking advice in this area. My ministerial colleague Simon Hughes is chiefly seized with this. The provision of online services for making LPAs should make them more attractive to a wider range of people and make it simpler and quicker for them to make an LPA. I hope that that will encourage more people to plan ahead at an earlier stage, rather than leaving it until the onset of a lack of capacity is imminent. She was right to talk about the fact that these things can happen very suddenly. I have experience of cases in which people have brain-acquired injuries when it is all too late to consider these matters.
What is being done to increase knowledge of LPAs? A current awareness campaign, Choice not Chance, is aimed at encouraging people to consider making an LPA to ensure that their choices count and decisions are not left to chance. The Public Guardian has appeared regularly on the Radio 4 programme “Money Box Live” to give advice and answer questions about LPAs, and he was recently involved in a webinar for the nursing profession. The OPG has carried out extensive work with the banking profession and has developed guidance to help financial institutions to recognise LPAs and understand what they mean and how to work with attorneys. The noble Baroness, Lady Warnock, spoke of the need for better information available in GP surgeries, and I am sure that that is right. The OPG prepares a quarterly report to the financial institutions highlighting feedback received about the customers’ experience in using the LPA or court order, and bank-specific feedback is provided to each institution to assist them in shaping their services.
The noble Baroness, Lady Hollins, stressed the need for more information for service users. I very much agree that it is vital that we provide all necessary support to those who lack capacity. That is, of course, fundamental to the Act. The MCA directory referred to is still receiving submissions, and I believe that local NHS and social care organisations have produced specific material for service users. However, I would be happy to commit now on behalf of the Government to ensuring that the new MCA directory has a dedicated service-user page. If the materials do not already exist at a local level, the Department of Health will explore options for commissioning those resources.
I am conscious that there may be some other queries that have been raised during the course of the debate that I have not answered. I can assure noble Lords that we will study Hansard and try to deal with any outstanding queries that have not been answered either in the letter or in my response.
The committee’s report has served a very vital task. It has brought mental capacity to the forefront of people’s minds. This is particularly important with the growing numbers of people living longer, with learning disabilities or with dementia. No statistics, or at least no hard statistics, exist on people who lack capacity. But around 2 million people are affected, based on 800,000 people with dementia and 1,200,000 with learning disabilities. All those with an interest in mental capacity, be they professionals, carers or the individuals themselves, have an interest in raising awareness of the Act and its ethos of empowerment.
We will continue to work with everyone to ensure that the awareness-raising and implementation continue. I reiterate my thanks to the noble and learned Lord and his committee again for raising this report as a subject of debate and to all noble Lords who have participated in this debate—and, I should add, for their continued, valued contribution to the advancement of knowledge and understanding of this difficult but very important subject.
My Lords, I am grateful to all noble Lords and to the Minister for contributing to this stimulating and wide-ranging debate. Noble Lords have raised different aspects of the report and drawn attention to it, thereby giving it much wider coverage than I was able to do. I am grateful to the noble and learned Lord, Lord Brown of Eaton-under-Heywood, for his explanation of the Cheshire West decision. In response to a point raised by the noble Baroness, Lady Hollins, about voting, perhaps it might be of interest to know that when we visited Hammersmith Mencap, there was a young man who had severe learning disabilities but he had voted in every possible election. That was achieved because his mother, who was a French woman, took the time to sit down with him and explain, or his carer would explain, the details of the individual candidates in small stages. He became informed as to the choice that he had. We were particularly moved; he had voted in every election and intended to vote in the London mayoral election as well.
The committee’s report and this debate have shown the value of post-legislative scrutiny of legislation. The noble Lord, Lord Beecham, raised the point about the time it has taken but, as I said earlier, that has worked to our advantage in this case. As I understood it when I accepted the appointment of the chair of the Select Committee, it was a relatively new venture for the House to embark on post-legislative scrutiny of legislation. If that is correct, this report and other reports of similar committees highlight the value of the exercise which this House can undertake in respect of important legislation. The message that we can take away from this is that there is a need to maintain a review of this important topic into the next Government and to ensure that the Government are held to account so that progress is made as quickly as possible in this important matter.