The Committee has also published its call for evidence, and submissions are requested on a range of topics concerning the Mental Capacity Act (MCA), the deprivation of liberty safeguards (DOLS), deputyships, Lasting Powers of Attorney (LPAs), advance decisions and – of course – the Court of Protection. The deadline for evidence is September 2nd this year. I really hope that lots of people will respond to the call for evidence with their personal experiences, and it won’t just be dominated by lawyers and academics and the other usual suspects. Although there is a list of questions (27!) the call does say the Committee welcomes views on any or all of them, and in no particular order. So please spread the word, it would be great to get some stories from the front line into the public domain, especially if they came from families and people said to ‘lack capacity’ rather than just professionals. I am hoping that organisations like the British Institute for Human Rights, and perhaps advocacy and disabled people’s organisations will help people to get the word out about the call for evidence and share their stories. If you want to find statistics to put in your evidence, I’ve gathered together quite a few on the MCA, IMCAs, DOLS in this guide.
I have written to the Committee asking them to clarify that parliamentary privilege will attach to submitted evidence, so that people can disclose experiences of the Court of Protection which they would normally be prohibited from sharing with third parties. I believe (on the basis of conversations with people whose knowledge I have faith in) that this is so, but it would be good to get some written guidance on this – it is my understanding that in any case the clerks would redact any materials so as not to launch people’s identities into the public domain. It is worth bearing in mind that the Committee says in its call for evidence that parliamentary privilege will not attach to self-publication of any evidence you submit.
The second evidence session was fiery and fascinating, and Richard Jones’ opening salvo is worth reading in its entirety if you read nothing else. Jones strongly criticised the evidence that officials from the Department of Health and Ministry of Justice gave in the first evidence session (which I blogged about here), in particular he criticised the deprivation of liberty safeguards and the implementation of the Act. Here are some edited highlights from the session. But first, these comments from Baroness Browning are very illuminating as to the current thinking of the Committee:
‘…our report will show, I hope, from the evidence we have received, what needs to happen to make the Mental Capacity Act more effective and fit for purpose. I am basically saying that I not think it is fit for purpose. In fact, we were told last week by officials that, “Overall, our view is that the Act has been a success”. I would say that, like the curate’s egg, parts of it may have been a success but other parts of it are seriously lacking.’
‘I think it would be fair to make the assumption that the principle-based approach to the Mental Capacity Act is one which, with the possible exception of the statutory presumption of capacity, has worked fairly well, and that is what people see as being part of the success of the Act.’
On the basic principles of the Mental Capacity Act
‘…the Mental Capacity Act, when it was passed, was rightly seen as a progressive piece of legislation. It moved away from paternalism towards the enhancement of autonomy, which is welcome.’ (Katie Johnston)
‘I think that the Act is a good start. My practice is in community care, and was in mental health and homelessness pre-MCA. Before the Act came in, obviously there was no legal structure for decision-making and the assessment of potentially mentally incapacitated people.’ (Nicola Mackintosh)
‘…the test [of capacity] is the correct one, but it just gives rise to such difficulties in practice.’ (Richard Jones)
‘The principles are great; there is a slight concern about Sections 5 and 6 being geared towards protection of the carers rather than the rights of the vulnerable person being absolutely at the centre of all these decisions… I would say that the code of practice in many areas, in its case examples, is motherhood and apple pie. A dispute arises but over time, having talked together, everybody sorts everything out and everybody is happy. My experience—obviously, I only see those cases which present more significant problems—is that perhaps that is not always the case. Often, talking is a great way of sorting things out, but sometimes it does not work.’ (Nicola Mackintosh)
On the implementation of the Mental Capacity Act
‘From our evidence and what we have seen, the problem with the Mental Capacity Act is really one of implementation, and a lack of understanding among those who have to apply it on the ground’ (Katie Johnston)
‘In my experience a major problem is that many people who should be aware of the Act are not, and those who are aware of the Act often have a flawed understanding of its provisions. In that respect I take issue with the evidence that this Committee received last week from officials who indicated that the Act was well embedded in our culture. My experience, and most of the evidence, points in the opposite direction. The Act is not well embedded in our culture. There is a lot of work that needs to be done.’ (Richard Jones)
‘The Act is just ignored for most decisions.’ (Richard Jones)
‘My concern is at the way it has been implemented. Often in my practice, I see decisions being made by statutory agencies on behalf of vulnerable people who may or may not lack capacity, under the guise of best interests. I echo what was said about the answer being,“Does the person have capacity?”, and the outcome being led by resources. I see lots of cases where a person has been neglecting themselves, and the local authority or the relevant health agency has used the presumption of capacity to allow that to continue. Equally, I have many, many cases where my clients have been deemed to lack capacity because the outcome is going to be that the state spends less on them. That is one of my concerns.’ (Nicola Mackintosh)
‘Most decisions made on behalf of mentally incapacitated people are not preceded by a capacity assessment or a best-interests evaluation. Carers just get on with it…That is where the Act is in danger of coming into disrepute. The vast majority of decisions are not made incompliance with the Act. As I said, people just get on with it. So when is it that there should be a trigger for the formalities of the Act to be complied with? .’ (Richard Jones)
‘There are a lot of people there who are providing help, but a lot of them are not aware of the Act and of their responsibilities under it.’ (Richard Jones)
‘One of the problems is that the Act makes certain assumptions about the ability of individuals to assess capacity. I know a fair amount about the law. I was trained as a social worker many years ago. I do not feel competent to assess capacity, apart from very straightforward cases. It is a very skilled activity, but we assume that people have this skill. I question that.’ (Richard Jones)
The least restrictive option?
‘I echo what was said also about the lack of awareness, particularly within the NHS. I have had cases of vulnerable people who, were it not for the intervention of the Court of Protection, alerted by relatives, would have undergone very invasive, permanent, irreversible surgery because of the tendency to use the Mental Capacity Act in a best-interests, paternalistic way, particularly within the medical profession and the NHS. That is a real issue. There is a different ethos in terms of the social model of care, particularly with regard to people with learning disabilities. It is different for different client groups. For people with mental health needs and people with dementia, a different approach is taken from that taken with people who have learning disabilities. ‘ (Nicola Mackintosh)
‘We do not really know, because we do not really know that well how the Act is operating, but there is some evidence to suggest that the least restrictive alternative principle is not being complied with. I am thinking particularly of the research that I think the Alzheimer’s Society published recently, which showed that 60% or thereabouts of patients with dementia who were admitted to hospital were admitted from their home, but only 30% were discharged back to their home. That raises the question of whether sufficient attention was given to a robust care package being put in place to support somebody at their home. Obviously, cost comes into this. Because of the general low level of knowledge about the Act, we cannot really say that the principles are being applied as you—as legislators—hoped. ‘ (Richard Jones, I think referring to this report)
Kirsty Keywood: People I speak to on the ground report really positively about the principles—there is no doubt about it. They say that they find it very useful. So on one hand I have this very positive feeling, and on the other hand I look at the research that is being done on decision-making—and that does not form a solid national picture either, but we know, for example, from the research literature, that people tend to conflate issues of capacity with best interests,as we have seen already. That is a huge problem, that in some circumstances the desire to be protective can mean that the most restrictive alternative is not always adhered to… the people I have engaged with on a professional level report very positively. Symbolically, it was a very important thing that the legislation did,and I, for one, am very glad that they are there.
Professor Richard Jones: They are a bit motherhood and apple pie, are they not?
Kirsty Keywood: Yes, they are, and the devil is in the implementation, as we have seen.
On the deprivation of liberty safeguards
‘Parliament did not undertake its proper duty when DOLS went through both Houses—with the notable exception of Lady Browning who, when she was an MP, was one of the few parliamentarians who spoke on the DOLS proposals. When the two schedules… that make up the DOLS procedure went through Parliament, there was not one word of parliamentary debate. Not one word… So a major Act of Parliament dealing with the liberty of the citizen went through Parliament without one word of parliamentary debate. With all due respect, I think that is scandalous, and Parliament has a lot to answer for.’ (Richard Jones, you can read Lady Brownings comments in the House of Lords on the DOLS here, here and here)
‘I defy anyone to read Schedule 1A to the Mental Capacity Act and say, “I understand this. Gosh, it’s straightforward”. It is devilishly difficult to understand… The citizen should understand this legislation that is concerned with depriving them of their liberty. It should not be so impenetrable.’ (Richard Jones)
‘…the Department of Health, in a circular of 2010, reported that DOLS had been “successfully implemented”. I think that that was a wildly optimistic judgment to make in 2010. There is a lot of evidence to suggest that the opposite is the case. Most of this evidence will be familiar to the Committee. There are huge regional variations in the application of DOLS. Fewer than 1% of patients who are subject to DOLS make an application to the Court of Protection for their release. Some cases indicate that DOLS have been used as an instrument of oppression, where supervisory bodies such as local authorities have used DOLS to get their way, in a sense. I am thinking in particular of the Neary case, and also of a lady called Peggy Ross, who comes from Cardiff.’ (Richard Jones)
‘The situation that you outline where thousands, if not tens of thousands, are being de facto detained unlawfully is what is going on at the moment. Liberty’s main problem with the Act from a human rights point of view is that there are thousands, perhaps tens of thousands, of people who are deprived of their liberty in the sense of Article 5 of the European convention, and who are not subject to the safeguards guaranteed in Article 5.4 of the convention or even in DOLS because for a number of reasons, which I can go into, there is a great lack of awareness among people who should be assessing whether a DOLS order is required, when it is required and if it should be applied for.’ (Katie Johnston)
‘I think there is a real irony with DOLS, which is that it was brought in precisely because our common-law regulation of this issue was in breach of European human rights law because it failed to offer clarity to individuals who need to know in advance what their rights are. Quite what clarity the DOLS provisions offer to anybody is a mystery to me.’ (Kirsty Keywood)
‘We all know that there are major problems with DOLS, but I have experience of cases that have come to court because the RPR, on behalf of the incapacitated person, has made the application or has assisted the person to make the application to court. I have seen examples of where it has worked in at least two cases… In one case, the judge of the Court of Protection felt that the strength of feeling of that person was so important in his decision-making that he visited her in the care home, which is an example of very good flexible practice, which is what you need from the judiciary in this area. So there are examples of where it works very well, but I completely agree that the vast majority of my clients in care homes are being deprived of their liberty without any protection at all.’ (Nicola Mackintosh)
On replacing the DOLS
‘In my opinion, the DOLS regime is so complex and interlinked that it is impossible to amend.’ (Richard Jones)
‘…the protections given to patients who are subject to DOLS are far, far less than the equivalent protections given to patients who are detained under the Mental Health Act’ (Richard Jones)
‘I would say the better alternative, which in fact was flagged up by the Department of Health when the consultation exercise on DOLS went through, would be to amend the Mental Health Act—amend the guardianship provisions in the Mental Health Act, which to all intents and purposes at the moment allow for detention—to incorporate the DOLS population, so they would not be subject to the same mechanisms as a detained person would be subject to, but they would have the protections of the tribunal system and they would have the protections relating to monitoring of correspondence if the Act was amended properly. So you could tailor the guardianship provisions to meet the DOLS population but without full-blown sectioning being required. Yes, there would be expense, but in my opinion it would not be as expensive as the current DOLS system, which is extremely expensive, because a whole new structure has been set up. ‘ (Richard Jones)
‘I absolutely agree with Professor Jones. Guardianship would have to be revised to accommodate some of the issues that relate to deprivation of liberty, but that is doable. ‘ (Kirsty Keywood)
‘Whether guardianship is the right way forward—and I have some concerns about a single person being appointed as a guardian, which dates back to the Mental Health Act 1959 and the paternalistic approach which was taken then, which is precisely why the powers in guardianship were narrowed in the 1983 Act—I do not know’ (Nicola Mackintosh)
‘The case law of the Court of Protection has been quite lacking in how it has interpreted deprivation. DOLS are not being applied as it is. But the court has narrowed the definition of deprivation of liberty so that many people who are undoubtedly detained in the sense of Article 5 of the convention fall outside the scope of DOLS… In particular, I am sure that you are familiar with the Cheshire West judgement, which is coming through the Supreme Court. It develops an unfortunate test of normality where, essentially, a disabled person would not be deprived of their liberty if the restriction that they are subject to is something that could be expected of somebody with similar disabilities—I am paraphrasing. This is obviously completely unacceptable. It narrows the scope unacceptably and turns human rights on their head. Human rights are universal. Everybody is entitled to the same protections, and if there are restrictions, they have to be justified. So we think that a statutory definition of deprivation of liberty that is not tied to Strasbourg would be a real help in increasing certainty.’ (Katie Johnston)
‘I think that the definition of what a deprivation of liberty is does not show the Court of Protection at its best.’ (Kirsty Keywood)
‘I agree that the line of judgments on what is a deprivation of liberty has been extremely unhelpful to everybody applying the Act on the ground, and also to all those people who in my view remain detained in hospital without any protections.’ (Nicola Mackintosh)
On ‘Adult Protection’
‘One of the unanticipated consequences from my perspective, interested as I am in adult protection issues, is that it is absolutely true to say that the Mental Capacity Act had a very empowering ethos behind it. However, what we have discovered since the enactment of the legislation are the very serious harms that many vulnerable people have come to. In reviewing their experiences, many of which were profiled in serious case reviews, and perhaps most prominently in the Winterbourne View case, it is quite clear that we have had a series of developments in policy and also in law that should force us to think carefully about how we balance empowerment and provide vulnerable people who have challenges around decision-making because of their circumstances with protection… I am aware of a number of people who have either failed to receive care or have “chosen” to disengage from beneficial services when relevant agencies have not asked questions about whether the decision to refuse care was a capacitous one. When pushed by people like myself to explain why, with a person whose decision-making at least raises concerns or questions that need to be answered, an assessment of capacity did not take place, the answer came back, “Well, there is a statutory presumption of capacity. ‘ (Kirsty Keywood)
‘Winterbourne View, in my view, is just the tip of the iceberg. Every single case I deal with — and I deal with these cases day in and day out—is an example of the abuse of a vulnerable person. I have not had one case where there has not been financial, physical or psychological abuse, and in many cases there has been all three. Safeguarding is a big issue. You ask, “What could we do? Could the legislation be changed?”.Yes. There needs to be a safeguarding Act. There needs to be protection against cruelty and the abuse of vulnerable people.’ (Nicola Mackintosh)
‘Most people who are affected by the Act have no independent advocacy. They do not have access to an IMCA or to relatives. A lot ofpeople with particularly severe disabilities— challenging behaviour and so forth—are less likely to have family and friends involved in their welfare. One of the things that could be doneis to bolster the advocacy services and the right to independent advocacy over a larger range of decision-making than is the case under the current IMCA scheme.’ (Nicola Mackintosh)
‘…there an awful lot of care homes where people are self-funding and do not have ready access to any kind of advocacy service and family members may simply not be close enough to offer that kind of insight and scrutiny of what is happening’ (Kirsty Keywood)
‘There is often delay in appointing an IMCA—the independent mental capacity advocate—and one of the reforms that we would consider would be that if the representative appointed for the person lacking capacity were a family member or a friend, instead of leaving the care home with more flexibility in appointing in the IMCA, that should be automatic to ensure a ready means to access justice.’ (Katie Johnston)
‘I have experience of very good quality service being provided by some IMCAs and not by others, but you will have that in any system. The difficulty is that the IMCA input is severely limited at the moment. It could positively be expanded… The current IMCA service is very limited to just a single issue; for example, a change of residence. That might be two, three or four hours’ worth of input from the IMCA, which is not really long enough to spend time getting to know the person, listening to their wishes and feelings and really ascertaining what is going on for them as a human being. That is what it comes down to at the end of the day. The IMCA could provide a pivotal role in ensuring that independence of voice for the incapacitated person, but without so many of the artificial limits which are currently being placed on them.’ (Nicola Mackintosh)
‘There should be an IMCA in every single case where the person is assessed as lacking capacity.’ (Nicola Mackintosh)
‘The IMCA scheme has a lot to commend it. From a negative point of view, I have not had much experience of that, but the involvement of the IMCA can lead to delays in terms of the decision being reached. My own experience, which is focused on decision-making in hospitals, is that the IMCA very rarely disagrees with the best-interests decision that is being advocated. So I am not sure what actual impact the IMCA has in terms of changing minds. ‘ (Richard Jones)
‘I have a strong sense that IMCAs can work incredibly positively to advocate for people who lack capacity. They are very much restricted to circumstances, by and large, where the person without capacity has no family member or unpaid carer… As we have seen today, there are certainly circumstances where relatives may be distant and where there may be such conflict among relatives that actually an IMCA could be quite an empowering tool for some sorts of particularly complicated decision-making.’ (Kirsty Keywood)
On the relationship between the Mental Capacity Act and the Mental Health Act
‘…the relationship between DOLS legislation and the Mental Health Act is not clear. People do not understand it. That is totally understandable, given that there are two parallel pieces of legislation, both allowing for the detention of mentally incapacitated people. There is bound to be confusion, and although, again in evidence last week, you were told that the relationship is now well understood, you were given an example by an official which suggested that they did not understand the relationship between the two Acts. It was an example relating to Winterbourne View. ‘ (Richard Jones)
Kirsty Keywood: On the interface between the Mental Capacity Act and the Mental Health Act, as a lawyer I am very drawn to the safeguards that are present in the Mental Health Act. However, what was really interesting about the engagement exercise that the Department of Health did with people with learning difficulties, and also family members and informal carers, was that they preferred the Mental Capacity Act to the Mental Health Act. It could be, of course, that the Mental Health Act was the vehicle for the majority of the appalling treatment that happened at Winterbourne View. But there is something there that we have to acknowledge. There is something about the Mental Capacity Act that family members seem quite drawn to, when faced with a choice between the two pieces of legislation.
Baroness Shephard of Northwold: I think that in people’s minds, the Mental Health Act may be the equivalent of detention.
Kirsty Keywood: Yes, and quite stigmatising.
Baroness Shephard of Northwold: Yes, in the mind but not necessarily in reality.
On human rights
‘There are also major provisions in the Mental Health Act that protect the Article 8 rights of patients, in particular the consent to treatment provisions. There is no equivalent in DOLS. In fact, in a very recent case a judge complained that the DOLS legislation was silent when it came to the Article 8 rights of patients.’ (Richard Jones)
‘I will say that the problem of self-funders is exacerbated by what has become known as the YL loophole, which is that, as the law currently stands, persons who are in a self-funded care home or residential home are not subject to the same protections of the Human Rights Act as they would be if they were in a local authority-funded care home and they were placed by the local authority.’ (Katie Johnston)
On the Court of Protection
‘…the Court of Protection… is not an appropriate forum for bread-and-butter welfare cases, if I may use that term. Serious consideration should be given to an alternative tribunal structure.’ (Richard Jones)
‘The Court of Protection, as a vessel of advice and legal guidance, is so removed from the experiences of most family carers that there is nowhere for many of them to turn to in order to get some support and advice. I am particularly concerned about individuals who are self-funding in care homes. We know that they are not subject to the same kind of scrutiny and practice. Families have very limited opportunities to access support unless they are prepared to take the tortuous and financially difficult road of approaching the Court of Protection. Access to justice for informal care-givers is a real problem. Partly for that reason, I support the view that a tribunal system that operates much closer and is much more accessible to family members and informal care-givers might be able to resolve some of these quite complicated issues. We see this happening in other countries. It is not beyond our capability to do it here, but it comes with a price tag, of course. ‘ (Kirsty Keywood)
‘There are very hotly contested disputes—I can speak from great experience. In cases that come before the Court of Protection, there is often a big clash between the family and the professionals. One thing that I try to do in my cases is mediate a solution. A lot of the time there is a misunderstanding and a clash between the family and professionals, and there needs to be more dialogue to resolve that. ‘ (Nicola Mackintosh)
‘With exceptions, I have been incredibly impressed by the judges in the Court of Protection. I have been very heartened that they have given rulings and declarations with great humanity and compassion for the people and families whom they are supporting… Lord Justice Munby said that the Court of Protection offers a Rolls-Royce service. That is absolutely right. The difficulty for me is that it comes with a Rolls-Royce price tag that many local authorities cannot afford. ‘ (Kirsty Keywood)
‘The court works well in many cases, even though only a tiny proportion of disputes come before it. One of the major issues that I have is that where there is a serious dispute about a serious issue, whose responsibility is it to place it before the court? That is unclear. For example, if a statutory organisation is purporting to make a decision on behalf of an incapacitated person where there is a clear dispute about a serious issue, in my view that statutory body has and should have the responsibility for placing that dispute before the court for determination. In my experience, what happens is that the statutory body just goes ahead and makes the decision, and leaves it either to an advocate, if the person is lucky enough to have one, or to some other person, to bring the case before the court. Often that simply does not happen. So that is a serious shortcoming that could be plugged. ‘ (Nicola Mackintosh)
‘The courts need to go to where the person and the family are. We should not have a situation where everybody has to travel very large distances to turn up for a hearing that starts at 10.30 am, only to still be waiting at 4 pm and maybe not even to go before a judge. That is not acceptable.’ (Nicola Mackintosh)
On the wider landscape of care
‘We no longer have the old-fashioned social work, the therapeutic work between social workers and families or individuals, which we used to. We have a very different system of a single one-off assessment of needs followed by a brokering of a care package, and then effectively the case is closed until the next review, which might be a year hence.’ (Nicola Mackintosh)
On legal aid
‘…most—though not all—cases are funded by legal aid. Legal aid is available, but it is limited. One of the categories of case for which it is not available in the Court of Protection is where a vulnerable, incapacitated person is being psychologically abused. Physical abuse is included but psychological abuse is not. Only one third of Article 8 situations are included. For example, residence or a change of accommodation is not included. In practice, when one is faced with a disputed decision about a change of accommodation, it may also involve contact disputes and the deprivation of liberty. It may involve issues of physical abuse. Therefore, the person is caught—and entitled to legal aid—through those other headings. But it is quite strange that those two headings are excluded from LASPO, which mirrors what happened before.
‘The other thing is that legal aid is means tested. LASPO introduced new, much more stringent means tests… In the vast majority of cases that come before the Court of Protection, people may be eligible for legal aid, subject to their means, but if they have even a small level of capital, they will not be eligible. So things are very different to how they were before 1 April. That is the short answer.’ (Nicola Mackintosh)
On Article 12 of the UN Convention on the Rights of Persons with Disabilities
‘Your special adviser can tell you more than I can about the UN Convention on the Rights of Persons with Disabilities, but that signals some important changes that are ahead.’ (Kirsty Keywood)
‘The UN Convention on the Rights of Persons with Disabilities has a lot to tell us. I am not sure that we all entirely understand quite where it is going to take us, but certainly it talks about the importance of developing systems ofsupported decision-making rather than proxy decision-making. This idea that if a person lacks capacity, other people move in and make a decision on their best interests is not really within the ethos of the UN convention, and some countries have been taken to task for having legislation that does just that. So when we think about redrafting the principles, one of the things that, if we are to take the convention seriously, we should recognise is the importance of taking steps to support decision-making and to acknowledge the will, preferences and rights of individuals. That does not mean that they will always be respected,but they have to be the starting point for any kind of determination of what is best for an individual. That is a really important lesson that we have to take forward because legally we are required to do so.
‘There are other mechanisms that the UN convention may require. It may be that we have to provide greater scrutiny by third parties of decision-making. We may have to reformulate the best-interests checklist as it currently features within the legislation to acknowledge the primacy of the person’s wishes and interests. We will get a clearer picture of what the UN convention expects of countries such as ours when it issues its report on the safeguarding of disabled people in Australia later this year. I think there will be some lessons we can take from that, and that is due in September.’ (Kirsty Keywood)
‘One way in which we could and should simplify it to some extent—I am not sure that this will satisfy you—is to get rid of the diagnostic thresholds. That is to say, currently under the legislation you have to have an impairment or a disturbance in the functioning of the mind or brain before you can be found to lack capacity by struggling with one of the other decision-making elements of the test. I think that that has to go. It is in breach of the UN convention and it is also incredibly difficult to know exactly what is at the source of somebody’s struggle to understand, weigh up, retain or communicate information… I have come across lots of people who did not have an evident mental health problem or a learning disability yet who struggled to makedecisions because of the very complicated circumstances in which they lived their lives. The current frame of the mental capacity test hinders the ability of some services to provide imaginative, effective support to those individuals. ‘ (Kirsty Keywood)