My Lords, treating people with respect and dignity, no matter what their disability or condition, are touchstones of our civilised society. Those are virtues that we all seek to promote, but sometimes, even with the best intentions, they do not always materialise. For that reason, the Government have now introduced legislation to reform and improve the current deprivation of liberty safeguards system. It is fitting that we do so in the month when we celebrate the 70th anniversary of the NHS, an institution founded on those and other virtues, which have sustained it as one of the most successful and respected health and care systems in the world.
Deprivation of liberty safeguards seek to empower and protect vulnerable people in our society by ensuring that any deprivation of the liberty of people who lack capacity is always in their best interests. It is a step that is never taken lightly and always with the intent to prevent harm to the individual. Even in cases where a person who lacks capacity is unable to make decisions, there is an express duty for all involved to consider their views and wishes as far as they can be determined. Despite the existence and undeniable necessity of these protections in our society, the deprivation of liberty safeguards system as it stands today is overly technical and legalistic, placing significant burdens on people and their families. It too often fails to achieve positive outcomes for those at the heart of this process, and we too often hear that individuals, families and their carers are experiencing a process that feels “done to them” rather than with their full consent and engagement. People’s voices, and those who care for them, are not being heard; this needs to change.
What is more, report after report has provided strong evidence of the strain the system is under and of unacceptable inefficiencies. It is costly and cumbersome, and in its current state is unable to process all the necessary applications to protect human rights. Last year, reports showed that more than 108,000 people were awaiting a deprivation of liberty safeguards application; again, this needs to change.
Many noble Lords have worked hard on this issue for years, and I would like to take the opportunity to thank them for continuing to shine a light on a system in urgent need of reform. In 2014, a House of Lords Select Committee published a detailed report which concluded that deprivation of liberty safeguards were “not fit for purpose”. Again in 2017, the chair of the National Mental Capacity Forum, the noble Baroness, Lady Finlay, for whose tireless commitment I am especially grateful—and I am delighted to see that her train got her here in time—reported that the current system was overly complex, excessively bureaucratic and costly. More recently, the Independent Review of the Mental Health Act: Interim Report, led by Professor Sir Simon Wessely, stressed the need for,
“an appropriate calibration between resources spent on delivery of care and those spent on safeguards surrounding the delivery of that care”.
We have listened and, following a Government commission, in March 2017 the Law Commission published a review of the deprivation of liberty safeguards and Mental Capacity Act. Over three years, the Law Commission sought views from a breadth of stakeholders, exposing the system’s struggles as well as looking at the process from a user’s perspective. The evidence, analysis and recommendations, drawn from across the system, have provided further impetus for reform. In March this year, the Government published their response to the report, accepting in principle the Law Commission’s model. Since the publication of the Law Commission’s review, the Government have continued to work closely with stakeholders and we have listened carefully to them to build on that model, streamlining it to focus on the crucial protections that this Bill seeks to mandate.
The Bill will reform the process so that it is less burdensome on people, carers, families and local authorities. Not only will it ease financial burdens throughout the system, creating significant savings of more than £200 million a year which will mainly fall to local authorities, but according to the Law Commission, it will also relieve local authorities of the significant legal liability burden of more than £408 million by removing the backlog of deprivation of liberty safeguards applications. It will introduce a simpler process with increased engagement with families and other carers, and afford swifter access to justice. It will ensure that any restrictions are proportionate and help to support cared-for persons to live as freely as they can by protecting their liberty. It will allow the NHS rather than local authorities to authorise the deprivation of liberty arrangements for its own patients, enabling a more streamlined and clearly accountable process in which the NHS has a clear role in helping to afford people their rights.
The Bill will make sure that consideration of restrictions on people’s liberties will be part of their overall care planning and considered from the earliest stages, rather than a bolt-on afterthought as under the current system. The Bill will also eliminate repeat assessments and authorisations when someone moves between a care home, hospital and ambulance as part of their treatment. In the words of Law Commissioner Nicholas Paines QC:
“This new legislation … will go a long way towards addressing the flaws of the current system and better protect the most vulnerable in our society”.
The president of the Association of Directors of Adult Social Services, Glen Garrod, has also indicated support for the Bill, observing that:
“Once enacted, it is hoped that this law will help ensure the protection of liberty of all people who lack mental capacity more effectively and efficiently than under the present Deprivation of Liberty Safeguards”.
Finally, before beginning debate on the Bill, I want to recount the seminal case study that underlines the importance of the legislation before us. It illustrates the role that this law plays in our society when protecting and empowering people. It illustrates the need to put individuals, carers and family members at the heart of a system, and reminds us that the framework fundamentally exists to ensure that vulnerable people are cared for and looked after. A man—HL—came to live with Mr and Mrs E, his carers, under a resettlement scheme from Bournewood Hospital, where he had lived for 32 years. HL’s carers found it rewarding to see him benefit from living in a family setting. Gradually, he became more confident and progressed beyond all expectations. HL would attend a day centre once a week, to which he travelled with the centre’s transport.
However, on one occasion, the usual driver did not collect him from home. Rather than taking him straight to the day centre as normal, the driver took a different route. HL became increasingly agitated. The next thing Mr and Mrs E knew was that HL had been taken back into hospital and detained there. As HL cannot speak, he was unable to object. Mr and Mrs E were not allowed to visit him, apparently in case he wanted to leave with them. When HL returned after various legal proceedings he was “in a terrible state”, in the words of his carers. Eventually, a legal case brought to the European Court of Human Rights found that HL was being deprived of his liberty without the necessary legal safeguards. This ruling triggered the introduction of deprivation of liberty safeguards in 2009. The story emphasises the importance of this system and that a rights and person-centred approach is needed to deliver better public services for everyone. Up to 2 million people in our society have impaired capacity, so many of us in this Chamber will have had direct experience of it among our family and friends. It is essential that the system afford the necessary protections for the most vulnerable people.
To conclude, we have an opportunity to transform the deprivation of liberty safeguards process, improve access to human rights, support families, carers and individuals and reduce pressures on the health and care system. We have an opportunity to bring about change and I look forward to working with noble Lords to make sure that we use this opportunity to improve the welfare of some of society’s most vulnerable people. I beg to move.
My Lords, a recent report by the Joint Committee on Human Rights called for a statutory definition of what constitutes a deprivation of liberty. The Bill does not offer such a definition. If it did, we would have clarity for families and front-line professionals; without it, there is a risk. We are reminded in an excellent paper from the Library that the Law Commission, which reviewed the existing legislation, concluded that the deprivation of liberty safeguards failed to offer sufficient protection of the rights of those deprived of liberty. Indeed, all too often, according to the report, it had been “theoretical and illusory”.
The Bill widens the number of living arrangements that are covered by the current deprivation of liberty safeguards system to include any setting. For it to apply, an individual must be aged 18 or over, lack capacity to consent to the living arrangement and be of unsound mind. To be authorised by a council or hospital, the living arrangement must be “necessary and proportionate”. There are also proposals for consultation on the living arrangements and for a “pre-authorisation review”. Assessments under the proposals will be carried out by councils or hospitals unless the individual lives in a care home, in which case it would be carried out by the care home manager. The last criterion would include autistic people who live in residential care. In a response to the Law Commission, the National Autistic Society, of which I am a vice-president, welcomed the attempts to create a simplified administrative regime that could tackle the significant delays in the current system.
However, many concerns remain. In its current form, the Bill does not adequately secure the rights of autistic people. Under the current deprivation of liberty safeguards system, a deprivation of liberty needs to be in an individual’s best interests for it to be authorised. The Bill moves away from best interests. Why does it do that? Instead, to be authorised, a living arrangement must be “necessary and proportionate”. The new criteria risk losing sight of what is best for the individual and what the individual wants. Let us be wary of enacting legislation that pays scant regard to the individual, in particular an individual who, in the context of the Bill, is perhaps the most vulnerable in society.
There is a duty to consult on care arrangements. The Bill says that the purpose of this consultation is to ascertain the individual’s wishes. However, the list at paragraph 17(2) of Schedule 1 omits the individual altogether. Although an autistic person might lack capacity to decide about living arrangements, their preferences or wishes should be an important factor in any decision about their lives. I am not sure what a decision-maker is expected to do with the results of this consultation. It is not made clear whether this is part of a determination that an arrangement is “necessary and proportionate”. This needs to be clarified. I hope that it will be.
The National Autistic Society echoes concerns expressed by Mencap that this removes the rights of deputies or lasting powers of attorney to refuse the authorisation of a deprivation of liberty. Overall, the lack of inclusion of best interests, the lack of interest in trying to ascertain what the individual wants and the removal of the rights of deputies or lasting powers of attorney is most definitely a backward step in putting the individual at the centre of any decision-making process. The Bill surely should enshrine individuals’ best interests, as did the Law Commission’s proposals. The role of these interests within a determination about a deprivation of liberty must be clarified and I hope that it will be.
A pre-authorisation review is required in the Bill to agree to a deprivation of liberty. It says that this should be carried out by someone who is not involved in day-to-day care of the individual. However, the wording causes me concern. As drafted, it is not strong enough to secure independence. It will be carried out by an independent approved mental capacity professional only if it is reasonable to believe that the individual does not want to live in that arrangement. It is unclear how the reasonableness of this will be determined. The wording is too weak to secure the rights of autistic people who might lack capacity. Even more astounding, there is no duty whatever for the person carrying out a review to have met the individual whose case this person is reviewing. This simply cannot be right. The Bill must require independent reviews by an approved mental capacity professional in all circumstances.
If an individual resides in a care home the Bill’s requirements to carry out an assessment and consultation fall to the care home manager. While this would relieve some of the administrative burden on councils and hospitals, the National Autistic Society is concerned, and rightly so. First, the administrative burden will simply shift to care home managers, who are already stretched and may not have received the training needed to carry out these tasks. Secondly, the process in the Bill does not adequately safeguard against these assessments being, in effect, rubber-stamped by councils and hospitals, particularly while the duties around pre-authorisation reviews are so weak. This could lead to a conflict of interest, whereby care home managers are de facto authorisers of deprivations of liberty. The Government should consult more widely on this. Surely we need much more consultation.
The Bill requires that an authorisation can last up to 12 months. At the end of this period, it can be renewed for another 12 months or less. However, subsequent renewals may last for up to three years. Under the Care Act 2014, reviews of care and support plans should take place annually. Any deprivation of liberty should be considered within these reviews. It would be far more appropriate to allow for ongoing renewals of up to one year, to align more closely with care and support planning. I hope the Bill might be amended so that we can provide for 12-monthly reviews.
All individuals and their appropriate person should be able to access support from an independent mental capacity adviser with the right skills to challenge unnecessary deprivation of liberty. This is currently not in the Bill. Rights to independent mental capacity advisers should be extended to cover all individuals.
There is much to be concerned about in this Bill. I really hope the Government are in listening mode. They certainly need to be.
My Lords, I am not saying that some Members of your Lordships’ House are not veterans on this subject, but I came in today with my hard copy of the Mental Capacity Act 2005: Deprivation of Liberty Safeguards—Code of Practice. I may be the only person who has one, but I went back to look at it over the weekend in preparation for this. I am very glad to be taking part in this debate, alongside the noble Baroness, Lady Barran, who will bring to it her fresh eyes: I think that that perhaps shows one of the great strengths of your Lordships’ House.
I start by saying that the legislation we are considering came about because a vulnerable adult, HL, was detained in a place he did not want to be and his carers knew was not right for him. It turned out that he had fewer safeguards than someone who had been sectioned under the Mental Health Act, or who had been detained under the criminal justice system. As we dive into the detail of what is inevitably quite a technical Bill, I urge us all to keep that person, and the hundreds of thousands of people like him, in mind. As we look at a piece of legislation that is essentially more than a decade old we need to think about updating this legislation in light of changes in society. We know that by 2030 there will be 2 million people over the age of 65 who are ageing without children: they will not have close family members to look after their interests. I rather think that our acid test ought to be whether we think that what is being proposed will look after those people.
It has been apparent since 2007—we should bear it in mind that the legislation we are talking about was not part of the Mental Capacity Act but part of the mental health legislation—that the safeguards have been poorly understood and practised. That is because the two pieces of legislation do not work well together or, indeed, at all. The mental health legislation rests on the judgment and expertise of individuals, saying ultimately what they believe to be right for the safety of other people. The Mental Capacity Act is instead based around the principles of autonomy, empowerment and the importance of supporting decision-making. Mental health legislation is very strictly overseen by statutory oversight bodies. The Mental Capacity Act never has been and therefore it is not surprising that when it has been implemented, it has been implemented very patchily and has been reliant largely upon the dedication of interested professionals.
Noble Lords will have had a number of briefings which talk about the welcome extension of these safeguards to settings such as care settings. I do not have a problem with that; in fact, I welcome it. I think many care facilities, particularly those run by charities, which have long and dedicated experience in looking after people with learning disabilities, will implement this extremely well, but they will do so without sufficient oversight or a sufficient guarantee that if they do not do their job properly the people concerned and their carers will have the relevant access to information and right of appeal. If the Government had intended to sort out this fundamental issue that has been hanging around for 20 years, they would have waited until the current review of the mental health legislation, which is being carried out by Sir Simon Wesley and which is inevitably looking at DoLS, had been concluded, but they have not.
Unlike the Law Commission, which took great care to consult on its proposals, the Government have come forward with this piece of legislation on which there has been very little consultation. It is quite clear that the Government have gone through the Law Commission legislation and selectively picked pieces out of it, when in fact the Law Commission was trying to bring together a whole package of measures which, taken as a whole, would have been a robust defence of the liberty of individuals. So my first question to the Minister is: why this legislation and why now? Why not wait until the mental health legislation is reviewed? Why not have a consultation on which people with interests, such as the parents or the families of people who have been detained, could talk about what has gone wrong and what has not worked in the current system? I say to the Minister that if the hurry is about saving money, that is something your Lordships’ House will have to bear in mind as we scrutinise the Bill.
The Select Committee which reviewed the implementation of the Act, on which I sat, was concerned about very patchy introduction. We were right. We now have the figures, which show that in some parts of the country the waiting time for having one of these assessments done is longer than the time for which somebody is supposed to be detained. There is no doubt that this has to be changed. But the changes which the Government are choosing to bring in do not strike me as being sufficiently robust. The noble Lord, Lord Touhig, began to outline some of the main areas of concern.
There is also concern about the limiting of legal aid. I hope that other noble Lords, in particular the noble and learned Lord, Lord Brown of Eaton-under-Heywood, will perhaps look at the limitation of legal aid. We are in all in favour of having a system in which fewer people need to go to court fewer times, but when they do have to go to court they need to be able to be properly represented. Very few of them are in a position to represent themselves against local authorities or other authorities which have access to their own legal services. I would like us to look at that.
Secondly, the new definition of “proportionate” does not adequately reflect the best-interest tests that were in the original legislation. That is a severe problem. I understand, and noble Lords will appreciate, the desire to cut down on repetitious assessments and so on, but there is a danger that we might end up with decisions being made about a person’s capacity to make one decision which rest on information that was gathered for a wholly different purpose. That would not be right. I also think we have missed a trick in relation to the recognition that there are a number of people whose capacity to make decisions fluctuates. The Law Commission recommendation on that subject has not been picked up in the Bill.
Finally, I do not doubt for a moment that the Government have good intentions but there are several areas in which the detail of the Bill is deficient. We should also bear in mind the strong possibility that people who found themselves in the position that HL did all those years ago may not have the protection of the European Court of Human Rights in the future. Therefore, it is incumbent upon people in this Parliament to make sure that the human rights of those people enjoy greater safeguards than they have ever done in domestic legislation before. For those reasons, I conclude that the Bill before us is extremely flawed and deficient. I suggest that your Lordships bring their considerable experience and expertise to bear to change it radically before it goes to another place.
My Lords, I must declare my interest, having chaired the National Mental Capacity Forum for almost three years, and having drawn attention, in March 2015, to the urgency of deprivation of liberty safeguards reform.
The Bill has had a long gestation period. Regarding the Bournewood gap—the history of which was outlined by the Minister and the noble Baroness, Lady Barker—we tried to ensure compliance with Article 5 of the European Convention on Human Rights in relation to those with impaired capacity who are unable to consent to their living and care arrangements. We should have been more vocal about our reservations when that legislation went through in 2008, because it focused on deprivation of liberty and seemed to ignore P’s security and empowerment.
The Cheshire West judgment of 2014 resulted in huge increases year on year in the number of people with impaired capacity identified as being deprived of their liberty in one way or another. Therefore, without the deprivation of liberty safeguards, their arrangements constitute an illegal deprivation. As the Minister said, last year more than 108,000 people were referred for DoLS assessments. Many of them are still waiting and more have joined that list. They are all illegally detained and the time delay for DoLS assessment has lengthened year on year. The bureaucracy of the current system is crippling, with six separate assessments needed, which can leave the person, P, feeling confused and unable to understand what is happening or why they are being asked personal questions by a stranger. The burden on adult social care is overwhelming. It would need around £2 billion injected just to clear the backlog, but that would still not solve the problem. The administrative processes themselves need urgent reform, and the vulnerable need better protection and better access to justice.
A little history is relevant here. The House of Lords post-legislative scrutiny Select Committee report of March 2014, which stated that the DoLS provisions are not fit for purpose, led to the Law Commission review that Tim Spencer-Lane has been leading. This is the widest consultation that the Law Commission has ever undertaken, travelling the length and breadth of the country to take evidence from as many as wanted to offer it, and I was privileged to be able to sit in on some of those sessions. The Law Commission’s consultation and draft Bill have fed directly into the Bill before us, as Tim Spencer-Lane has been working closely with officials. There has been continuity through the system, which I think is not widely known to people.
Chairing the National Mental Capacity Forum, I have asked many in health and social care how many people have had improved care as a result of DoLS. The estimates are usually around 4% and have ranged from around 3% to 8%, so for all this bureaucracy and expense, fewer than one in 20 have clear better outcomes from the current process. A placebo response for an intervention can be expected in about 20% of people. We would not allow a medical or surgical intervention that fared worse than placebo in improving outcomes, so why put people through these burdensome assessments when we have no evidence of benefit?
Around 2 million people with impaired capacity stand to benefit from the Bill. Importantly, when DoLS has improved care, it seems that this has been through a revised care plan. The best interest assessors who are bringing about improvements will need greater powers as independent mental capacity professionals to target prospectively those thought to be at risk and not depend on referrals from providers once a person is in care. Can the Minister explain how these professionals’ greater powers to protect those at risk will work and how this new system will relate to safeguarding and the processes around it?
This focus in the Bill is on the care plan, and it returns to the core principles of the Mental Capacity Act. Whether in hospital or a care home, those overseeing care are directly responsible for the care plan and for ensuring that, compliant with the empowering ethos of the Mental Capacity Act, the arrangements are the least restrictive option. The restrictions must be necessary and proportionate to ensuring that any deprivation of liberty is justifiable for P’s security, while allowing them as much independent and enjoyable living as possible. In developing a care plan, P’s wishes and feelings must be taken into account. P must be supported to take as many of the decisions over care as P is able to, and they must be involved. This builds on the important amendment that the noble Baroness, Lady Barker, introduced into the Mental Capacity Act 2005, establishing the place for an advance statement of wishes. That becomes particularly important for people with fluctuating capacity. Can the Minister provide assurance that this will be stressed in the code of practice whenever a best interest decision is taken, whether by health and social care staff or by a donee of lasting power of attorney for P?
The focus is on liberty protection irrespective of how care is funded, and that is welcome. Liberty protection safeguards are rightly so named and their portability makes sense because the care plan detailing how liberty is protected refers to P. Of course, the care plan must also be dynamic and revised appropriately. Will the Care Quality Commission be responsible for inspecting whether the liberty protection safeguards are dynamic and portable, with a review triggered if circumstances change, particularly for those with learning difficulties and other stable conditions, if an LPS has been signed off in the longer term for three years? In other words: if things change, everything changes.
Those who know P best—the family and those important to P—must be consulted, not sidelined as has happened sometimes with DoLS. Can the Minister confirm that the code of practice will signpost the involvement of expert assessment of those with speech and language difficulties, who are too often labelled as having impaired capacity because they have appeared unable to communicate?
The changes will allow social work staff to concentrate on the most vulnerable, freeing them up to provide person-focused training, so that on a day-to-day basis staff can support P better in making decisions and understand the importance of doing all that they can to involve P in decisions that need to be taken on his or her behalf.
In 2014-15, the year after Cheshire West, the cost to councils rose by more than £98 million, and it has risen further year on year. That backlog now needs £2 billion just to clear it. Will the Government undertake to review, after two years, that futile bureaucracy and duplication has been cut and tangible benefit to P increased?
The code of practice will be important in ensuring that care plans are properly devised and properly reviewed, both regularly and frequently. It will make care providers’ decisions more proportionate, through the emphasis on protecting liberty rather than risk-averse attitudes by providers. Concerns have been voiced about the care home sector’s ability to assess P, yet we rely on these staff day to day. I hope that there will now be mandatory training of all health and social care staff, not just care home staff, in all aspects of the Mental Capacity Act. Mandatory training is long overdue.
I hope that the Minister can assure the House that the code of practice will be developed quickly to address concerns that have been raised about the Bill. One of the most contentious is how liberty is defined, as has already been alluded to. It is important to differentiate disorders that have impaired a person’s liberty—post head injury; post meningitis; the dementias; learning difficulties; delirium, whatever the cause; the list goes on—from actions taken by those responsible for care that deprive P of liberty. Such actions must be justified as being the least restrictive options and designed to allow P’s liberty to be maximised and protected. Given the difficulties with a universally applicable definition, I hope that clarification can be included in the code of practice; that may be safer than trying to come up with something in the Bill.
The term “of unsound mind”, although current legal language—I recognise that it comes from the ECHR—is outdated and stigmatising and may benefit from better wording.
There is a concern that those aged 16 and upwards should be brought into the remit of liberty protection safeguards for consistency, even if they are in education, because transition can be a difficult time for those people and their families.
I hope that concerns about the Bill can be resolved rapidly, because this Bill is urgently needed. I remind the House of the five core principles of the Mental Capacity Act: capacity should be assumed until it can be shown why it is not present; all support must be given for decisions by P; people can make unwise decisions; when capacity is lacking, any decision must be in P’s best interests; and any such decision must be the least restrictive option.
This Bill is an add-on to the Mental Capacity Act; it does not replace it.
It is a huge honour and privilege to address your Lordships’ House today. I would like to start by thanking your Lordships for the very warm welcome that I have received from everyone on all sides of the House. I am grateful to Black Rod and her team for their care and attention to detail, and particularly to the doorkeepers who have manoeuvred me to the right side of the Chamber with a tactful “Where are you planning to sit, my Lady?”, or gently explained that “Morning” and “Afternoon” take on a whole new meaning in your Lordships’ House.
My supporters, the noble and learned Baroness, Lady Butler-Sloss, and my noble friend Lady Williams of Trafford, were superb at putting me at my ease during my introduction, and my noble friend Lord Sherbourne has been masterly in answering my questions with the utmost patience and encouragement. And encouragement is the word that best sums up the past two weeks. All your Lordships have been consistently, and at times almost fiercely, encouraging, and I feel extraordinarily lucky to be here.
Prior to joining this House, I worked for over 20 years in the City, founding one of the first European hedge funds, before going on to advise philanthropists and foundations on their charitable giving, as well as joining the boards of Comic Relief, the Henry Smith Charity and, most recently, the Royal Foundation.
Fifteen years ago, my life changed course when I asked several small charities what they thought was the biggest human problem that was the hardest to raise money for. They all gave me the same answer: domestic violence and abuse. As a result, the charity SafeLives was born on my kitchen table in 2004, with a focus on keeping victims and children safe in their homes wherever possible and holding perpetrators of abuse to account while still helping them to change. As chief executive, I worked with voluntary and statutory agencies across the fields of criminal justice, substance use, mental health, social care, children’s charities and the family courts. I was guided by many victims and survivors of domestic abuse, and today I pay tribute to their extraordinary courage.
Throughout, I have been supported by some exceptional mentors and have had the chance to try to tackle some truly important problems. I think I am safe in expecting that both those things will continue in this House.
Very high up on the list of important problems that this Bill seeks to address is that of when and how to deprive someone who lacks mental capacity of their liberty while upholding their rights. In preparing this speech, I spoke to several organisations working in this field: L’Arche UK, Shared Lives Plus and Gentoo. As a non-lawyer, I focused on the practical aspects of how the Bill will work and asked them all, “What works least well with the current Act in relation to deprivation of liberty safeguards, or DoLS?”. One person smiled and said, “Try and imagine doing this. We put an automatic reminder on our calendars every month to write to the local authority to authorise the DoLS. We rarely, if ever, hear back. If we don’t do it, we’re penalised by the CQC in our inspection”. They all highlighted practical problems with apparently pointless bureaucracy, a lack of consideration of the feelings of friends, families and carers, a disconnect between the views of social care and health professionals, and a lack of capacity to provide independent mental capacity advocates. They spoke of their frustration at an opportunity missed to protect vulnerable people, with an apparently uniform and blunt approach.
I believe that the Bill goes some significant way to addressing those concerns. There is a clear intention to simplify the bureaucracy involved and to listen to the views of families, friends and those who know and care for the individual, while providing more skilled resource to resolve the most complex cases. Welcome, too, are other practical aspects—the portability of the authorisations between settings and the extension of their duration from one to three years.
However, the key to success with this Bill when it becomes law will lie in the quality of its implementation. Does my noble friend the Minister agree that it is both helpful and necessary to give the responsible bodies and care providers absolute clarity, through the code of practice, about the Government’s expectations of them, particularly regarding those sections that aim to give agency and protection to those impacted by this legislation? I refer, in particular, to the training, qualifications and availability of IMCAs and approved mental capacity professionals as well as to the need to give timely responses when renewing authorisations and in the case of an appeal. This would give assurance to the family and carers of those lacking capacity that their rights and wishes will be upheld as well as their needs met.
“The test of a civilisation is in the way that it cares for its helpless members”.
I am sure that your Lordships will agree that this Bill and how it is implemented locally go to the very heart of that test.
My Lords, it has been a real privilege to hear the noble Baroness, Lady Barran, give her maiden speech. I enjoyed listening to her, and I think that we will all benefit enormously from her experience and her commitment to vulnerable people. I share that passion, so I hope we can do a lot of work together. She brings such a lot of important experience to this House. She has worked for many years to make a difference to the lives of a huge number of vulnerable people. I share her passion to eliminate domestic abuse and other forms of abuse and I hope that we can do some work together in future. I have worked in the field, particularly among abused older people, and the noble Baroness has done a lot of work among people of all ages. I have heard that she has four children and I have four children. I wonder whether there is a connection that brings our interests together because we know what bringing up a large family means. I wish her every success. I am sure that she will enjoy being in the House. I—like, I think, everybody listening to her today—look forward to working closely with her and gaining from her very valuable experience and commitment to people who are vulnerable and who need help and advice from her and from all of us.
I welcome the Bill, which has many positive features. It includes a lot more person-centred care planning, it attempts to reduce bureaucracy and it provides clarity around responsibilities for those closest to the delivery of day-to-day care. I acknowledge that there are omissions. Noble Lords who have spoken have pointed them out. We will concentrate on them as the Bill goes through our House.
Recognition that the system in its current form is overly technical and legalistic is long overdue. Indeed, in her letter to the All-Party Group on Dementia, which I co-chair, the Minister, Caroline Dinenage MP, remarked that the current system places too heavy a burden on people and their families and too often fails to achieve the positive outcomes that underpin the purpose of the process. I agree, and our committee will do all we can to help her make the Bill work and improve its outcomes, and I look forward to working with the Minister in your Lordships’ House to make that happen.
In 2013 our Select Committee on the Mental Capacity Act 2005 found that its provisions were inadequate and left those deprived of liberty without adequate protection. The committee felt that the provisions were poorly drafted, overly complex and bore no relation to the language and ethos of the Mental Capacity Act. The safeguards are not well understood and are poorly implemented. With this legislation, the appropriate delicate balance has to be struck between the protection and empowerment of individuals, who may lack the mental capacity to make their own decisions about their care and treatment, and the duty of care to staff, other patients and the public at large that the state has to protect them from the behaviour of people who may not be fully responsible for their actions.
I am not fully certain that in the Bill, despite the Government’s best efforts, we have got the balance entirely correct. Noble Lords will be aware that I am committed to promoting human rights for vulnerable people, so I welcome anything that seeks to drive up standards and accountability in the social care sector. I have been contacted by a social worker and co-ordinator from south Wales who is concerned that the new scheme, with its significant increase in legally prescribed duties for social workers, has not been fully discussed with leaders in the care provider sector. Indeed, he feels that many care home staff are scarcely aware of it and will be very concerned about these changes as they may not be well-informed enough to make the crucial decisions that will be needed. He feels that the lessons of the patchy implementation of the Mental Capacity Act to date have not been properly studied and that it may be that all we do is simply transfer the burden, backlog and chaos from statutory bodies to unprepared care homes. Could the Minister reassure us that, in his view, there has been appropriate consultation within the care sector?
I also share the reservations expressed by the charity VoiceAbility about the lack of weight given by the Act to the wishes, feelings and views of the cared-for person or their family and carers, with concerns about how compliant with Article 5 of the European Convention on Human Rights the new scheme is. Under the Bill, the right to refuse a deprivation of liberty safeguard by a lasting power of attorney or a deputy has been removed, so we have concerns that the rights and safeguards for the cared-for person might be diminished by the Bill.
It is good news that £200 million a year will be saved by local authorities. However, we have to suppose that the increased role of NHS and independent sector providers will lead to increased costs elsewhere, while the new responsibilities being imposed on care homes, hospitals and CCGs will need some thought, resources and training. For example, the Royal College of Speech and Language Therapists argues that assessors often do not recognise or know how to support communication difficulties. One can envisage that this could be a real problem if English is not the first language of the patient or their family.
As a vice-chair of the Local Government Association, I share its assessment that the transition to the new framework and its future framework implementation should receive additional resources to reflect the additional costs that may be associated with the change. I also share the view of ADASS that a period of transition is likely to be needed to enable hearth and care staff to adapt to the new system. I hope that the Minister will be able to reassure us on these points, that an appropriate cost-benefit analysis of the changes will be in place and that the training and integration aspects have also been fully thought through and costed.
I have one or two other reservations. I do not think it unreasonable to ask the Minister to explain why, when the Bill so closely follows the recent proposals from the Law Commission, it differs from them in several significant respects. For example, the regime applies only to those who are 18 and over although the Law Commission argued that LPSs should apply to 16 and 17 year-olds because it feels that the current regime is inadequate and is failing to protect the rights of some young people. The Government said they accepted this recommendation in principle but would,
“need to consider in more detail this recommendation’s practical application and implementation”.
Turning to older people, I welcome the inclusion of a new special procedure for care homes within the scheme, which gives them greater responsibility for arranging the assessments of people who may lack capacity from dementia. As much as I welcome this change, I share Age UK’s concern that provision must be made to ensure that care home managers have the training and resources to be able to clear the significant backlog of assessments under the Bill’s provisions.
In my view, the Bill should set out a specific route for authorisations within a person’s home. Can the Minister assist the House by explaining how he sees at-home assessments working? I note that the new system retains the distinction that, where an individual who could be detained under the Mental Health Act objects to being detained, they cannot be made subject to an authorisation under new Schedule AA1. I also share the concern of the Alzheimer’s Society that the current interface between the Mental Health Act and the DoLS process for authorising deprivation of liberty within the Mental Capacity Act is a key issue for people living with dementia.
Lastly, the Bill makes provision for the introduction of approved mental capacity professionals, who must carry out the pre-authorisation review and determine whether the authorisation conditions are met. This role replaces the best interest assessors’ role under the Mental Capacity Act. However, the Bill and the Explanatory Notes do not detail which professionals could act in this new role and how they interact with other clinicians. I know that the General Medical Council sees potential for conflict between its regulatory standards and the proposed legal requirements. It has called for more clarity about doctors’ roles and responsibilities in such a challenging area. Perhaps the Minister could explain a little more about how and when the Government plan to firm up the status and context of this important role.
In closing, we must find a way to define deprivation of liberty more clearly. The JCHR’s view is that this is needed to clarify the application of the Supreme Court’s acid test, which sets out questions that must be considered when determining whether an adult who has been assessed as lacking the capacity to consent is being deprived of their liberty. Without a clear definition, there is a risk that the Bill will be unworkable, particularly in domestic settings. The development of the LPS must also be considered in the wider context of other issues within the health and social care system, such as the upcoming Green Paper on care and support reform and the independent review of the Mental Health Act.
The Government need to act speedily to ensure that the rights of this group of very vulnerable people are clarified and that their needs are met quickly. They are not in a position to wait any longer.
My Lords, I am pleased to be speaking in this debate, conscious that I am a novice in this area of mental health legislation but very grateful that there are so many other noble Lords across the House with deep expertise in it. To start on a positive note, I welcome the intent behind the Bill and believe that it goes some way towards ensuring that the current high levels of bureaucracy, workforce hours and cost that have been a part of mental capacity assessments since the Supreme Court ruling in the Cheshire West case are offset by a more balanced ability to plan and deliver timely care while still safeguarding patients.
However, I have real concerns about its timing and its interaction with the Mental Health Act, and because it is silent on some of the key recommendations of the Law Commission report. I hope that at the end of this debate, the Minister will provide some explanation for the variance with the Law Commission proposals and the unexpected timing of the Bill, which seems to have taken many by surprise.
A quick glance at the statistics reveals the scale of the problem. Last year, more than 200,000 DoLS applications were made—a number certain to rise. The average time taken to complete the assessments was 120 days, with a backlog of more than 120,000 cases. The Law Commission has estimated that the annual cost of all this might end up being close to £2 billion a year, so there is clearly a major problem here that needs fixing.
The proposals in the Bill, essentially allowing NHS staff rather than the Court of Protection to oversee when and where to deprive people of their liberty, on the face of it seem to strike a better balance between care planning and the provision of what has too often been a box-ticking procedural safeguards process. The Bill comes at the same time as the recommendations from the Joint Committee on Human Rights only last week that a new legal definition of deprivation of liberty should be debated and defined, which could,
“produce greater clarity and would extend safeguards only to those who truly need them, whilst respecting the right to personal autonomy of those who are clearly content with their situation, even if they are not capable of verbalising such consent”.
All the briefings I have received from those working in the sector make it clear that the lack of such a new legal definition is a serious omission and risks jeopardising this legislation’s chance of successful implementation. That all adds up to my overall feeling about this Bill that we risk acting with indecent haste before all the relevant pieces of the jigsaw are in place to allow a coherent and joined-up new system to be put in place—and I know that that new system is much needed. I note that Sir Simon Wessely, chair of the Mental Health Act review, said as much in a recent blog, drawing attention to the fact that at the moment some people lacking the capacity to consent to their admission for care and treatment will fall under the Mental Capacity Act and the proposed new liberty protection safeguards, and some will be detained under the Mental Health Act. But—and it is a big but—the boundaries between the two are not clear. My main concern about the Bill is that, in rushing ahead to fix the clear deficiencies of the DoLS procedures, we are creating further complexity in an area already beset with confusion and complexity. My view, like that of some other noble Lords today, is that it would have been far preferable to have a single, fully integrated Act covering both mental illness and mental capacity.
The interaction with the Mental Health Act is at the very least a messy one. There is a real tension between wanting to tackle problems with the current mental capacity law straightaway—I fully understand that—and the need to properly link it with plans to improve the Mental Health Act. I know that the JCHR has called on the Government to move quickly on reforming the Mental Capacity Act, but this should not prevent close consideration of the two pieces of legislation and how they relate to each other. In response to the Law Commission’s proposals, I noted that the Government stated that they would await the Mental Health Act review’s recommendations on interface issues, including how reformed DoLS would interact with the Act. I find that quite a confusing statement. Could the Minister say whether and how the Government plan to fulfil that undertaking?
I am also concerned, as are others, that the focus of the Bill is on deprivation of liberty alone, rather than the wider amendments to the Mental Capacity Act proposed by the Law Commission. In particular, the important recommendation to put particular weight on a patient’s wishes in any Mental Capacity Act best interests decision-making process is absent, as are any additional provisions about advanced consent. As I have said, I really feel—others have said it far more eloquently than me—that this is a missed opportunity to treat vulnerable people with the dignity and respect that they deserve in what we all agree is a very difficult situation.
I turn to the issue of including 16 and 17 year-olds in the Mental Capacity (Amendment) Bill, as originally proposed by the Law Commission. The main reasons for this are twofold. First, using parental responsibility to authorise Article 5 deprivation denies 16 and 17 year-olds the uniform statutory protections available to people aged 18 and older. Secondly, including 16 and 17 year-olds would create greater certainty and standardised practices for this age group than currently exists. It is all a bit technical but, as I understand it, presently Article 5 deprivation can be authorised by four different mechanisms: parental responsibility, a court order, a police protection order under the Children Act, or the Mental Health Act.
Front-line clinicians I have spoken to are often unsure which option to pursue. This can cause delays of a number of weeks while professionals argue with each other about the most appropriate option. In the meantime, the 16 to 17 year-old is in a legal limbo, often stuck in a paediatric ward or A&E while these debates take place. The situation gets even more confusing if two people with parental responsibility disagree or if the local authority shares parental responsibility—for example, for children on a care order. This is an opportunity to make the situation for 16 to 17 year-olds much better, and we should take it.
The Law Commission’s proposals also included the very interesting idea that we follow the lead of many countries and include in the Mental Capacity Act a framework allowing people to make formal support agreements. This would hugely benefit family members of the person under the liberty protection safeguards and value their input to the process. However, the wording in the Bill is unhelpfully convoluted, and will make it more difficult for staff, patients and their families to understand.
As the Bill stands, there is a heavy burden on care home managers to manage the applications. An individual would be reliant on the motivation, knowledge and skill of the care home manager to identify deprivation of liberty and to take appropriate safeguarding steps. Managers’ level of knowledge and experience will inevitably vary enormously, resulting in an individual’s human rights potentially being neglected if a manager simply does not recognise what constitutes a deprivation of liberty and takes appropriate action. As other noble Lords have said, a major training programme would be needed, as well as significant resources for implementation.
My final point relates to the phrase “unsound mind", which I understand is still used because of the reference to the European Court of Human Rights. This is dated terminology which is offensive and stigmatising and has no clinical value. Imagine if you learned that this was an outcome of an assessment of your parent, partner or sibling. I stress again the importance of keeping the patient at the centre of our legislation, not the conventions or convenience of lawyers. Will the Government commit to removing the reference to “unsound mind” from the Bill?
In conclusion, I return to my concern about timing and the outcome of the review of the Mental Health Act, given that both Acts relate to the non-consensual care and medical treatment of people. The overlap between the two systems is one of the reasons that the current system is so complicated, and changes to address problems under one system will inevitably have unintended knock-on consequences for the other. What is needed is simplification and streamlining, rather than incremental, piecemeal reform. There is much to do to improve the Bill; I hope that the Government will be open minded and in listening mode.
My Lords, I am hesitant to speak in this debate, having not been involved in earlier work on the Mental Capacity Act 2005. However, having worked in mental health services and as a Mental Health Act commissioner over a number of years, and having overseen the Mental Health Act appeals of Mental Health Act managers, I do have an interest in deprivation of liberty decisions and, in particular, the justification and proportionality of them.
This is clearly an important Bill, and I applaud the Government for bringing it forward. The DoLS scheme was clearly cumbersome, little understood and in many ways deficient. It is, however, far from clear to me that the new system will be as simple for patients and carers to use as the Minister seemed to imply in his opening remarks. As other noble Lords have indicated, a key issue will be the interface between this Bill and the review of the Mental Health Act, which I understand will report in the autumn of this year. Both relate to non-consensual care and treatment and may apply to some of the same people. As the Royal College of Psychiatrists says, it is the overlaps between the two systems which to some degree explain why the current arrangements are so complicated and why staff struggle to use them. Changes to address problems in one system will surely have unintended consequence for the other. Clarity will be needed about when a patient should be subject to one Act rather than the other. It will be vital that no patient should be deprived of their liberty under both Acts at the same time. I understand that this happens at present, and it is important that this situation be brought to an end. Can the Minister gave the House some assurance about how the Government propose to achieve that end?
Another rather straightforward point, which was made by the Royal College of Psychiatrists and the GMC and with which I strongly agree—other noble Lords have mentioned it—is on the use of the term “unsound mind” in the Bill. The term, as others have said, dates back to the 1950s and is stigmatising and out of place today. The college suggests that this term be replaced by “has any disorder or disability of the mind”, which would certainly be greatly preferable. Will the Minister agree to bring forward an amendment to that effect? Perhaps he will be able to comment on that today.
As other noble Lords have said, it is difficult to understand why the Government have not extended the new scheme to 16 and 17 year-olds, as recommended by the Law Commission. Case law has established that the parents of a child under 16 can give consent to what would otherwise constitute a deprivation of that child’s liberty where the matter falls within the “zone of parental responsibility”, but a parent cannot give consent on behalf of a 16 or 17 year-old. Surely the Bill should apply to the young person themselves rather than assume that the parents will make decisions on their behalf. Again, maybe the Minister can explain this apparent contradiction this afternoon.
On the appeals process, under the DoLS system, appeals must be made to the Court of Protection, which can be complex, slow and expensive. Can the Minister explain why the Bill does not introduce any changes to that system? In particular, is there any reason why the appeals process should not replicate the system under the Mental Health Act, which seems to work pretty well? It is worth noting that the Joint Committee on Human Rights made the point that a tribunal system would be more efficient, accessible and cost effective, and would enhance the rights of the individual concerned to be directly involved in the proceedings. In addition, of course the Mental Health Act provides for a tribunal system, so we have a nice model to follow—and why not? Non-means-tested legal aid should be available in such cases but, again, it would be less costly to the taxpayer if tribunals were established to do that job.
The GMC has raised a concern about the lack of clarity in the Bill regarding precisely who should be consulted before an LPS authorisation is made. This apparently includes,
“anyone engaged in caring for the cared-for person or interested in the cared-for person’s welfare”.
Does this mean that both a GP and a hospital doctor should be consulted? Is that necessary? Surely the doctor who knows the patient best would be sufficient. How many others involved in the care of the patient should be consulted?
A particular issue in this context is the power of a decision-maker to decide who is consulted from the proposed list. Surely some are far more important than others. For example, if there is a holder of a lasting power of attorney with decision-making powers in relation to the care of the patient, surely that LPA must be consulted. Yet it seems that the decision-maker can decide whether that person is consulted. The same should apply to the next of kin, who surely must be consulted—it cannot be a choice.
An obvious gap in the Bill, as others have said, is any provision for a person to be able to consent in advance to specific care or treatment arrangements so that authorisation under the new safeguarding scheme could be avoided; it would also save a whole lot of resources and avoid delays for the individual. Advance decisions, with effective safeguards, would reduce bureaucracy and cost and enable more involvement of patients and their families. The Minister will be aware that advance decisions to prepare for end-of-life care are increasingly used—although as yet, not at all sufficiently. But where these advance decisions are in place, the problems for physicians and next of kin are greatly reduced in relation to decisions about whether life-prolonging treatment should be continued, for example. The need to respect the wishes of the individual is similarly important under this legislation. Can the Minister indicate whether the Government would object to including a system of advance decisions in the Bill, and if so, why?
In conclusion, is there any prospect that later stages of the Bill could be held over until the report on the review of the Mental Health Act becomes available, to try to ensure complementarity between the two? I also very much look forward, with other noble Lords, to hearing the Minister’s response to the points that have been made.
My Lords, it is a great pleasure to be present during this important debate to hear the maiden speech of my noble friend Lady Barran. We all wish her well in her contributions to your Lordships’ House. I refer to my interests in the register and to the fact that I am a carer and a deputy holding LPAs for vulnerable relatives.
I fully understand why my noble friend the Minister has a certain sense of urgency in bringing this legislation forward. As we have heard, there is clearly a problem that is hitting individuals and our health and care institutions, because of the backlog that is accruing. Clearly, there is a sense of urgency to try to resolve this. However, I begin by saying to my noble friend: it has to be resolved correctly this time. I say “this time” having served on the pre-legislative scrutiny committee for the Mental Capacity Bill, having worked on the Bill when it went through the Commons, having served on the post-legislative committee in your Lordships’ House, and having worked on all existing mental health legislation that we are currently reviewing.
There was a recurring theme on all those committees—there are people around the House who were with me on those committees and who know that we seem to have been doing this for ever. We were only too well aware of the Bournewood gap, which my noble friend mentioned when completing his remarks, and we still have not plugged that gap. It is essential that we plug it this time. Recommendation 21 from the post-legislative scrutiny committee of this House considered that we had inadvertently created a new Bournewood gap and that that should be closed. I have to say to my noble friend that I do not think that the Bill as drafted closes that gap. It is a good attempt, but I would like to have seen some pre-legislative scrutiny on this rather small but important Bill.
Let me share this with the House. At the weekend, I received correspondence from the professional carers of HL in the Bournewood case, which I was involved in many years ago. In respect of the Bill before us, they say it is bizarre that the Court of Protection gives authority to deputies to exercise control over P’s accommodation and care provision. As this Bill stands, it prevents them having any real power in the process. Mr E goes on to state that their acid test is this: if HL v Bournewood happened today, would he be any better protected? As a House dealing with the Bill before it goes to another place, we have to make absolutely sure that we get it right this time.
Concerns have been expressed across the House on behalf of interested parties and the charitable third sector, particularly by my friend the noble Lord, Lord Touhig—he and I both serve as vice-presidents of the National Autistic Society. This brings forward another issue. A lot of noble Lords have spoken today about vulnerable people. That is who we are trying to address in this legislation to get it right. However, vulnerable people are on a spectrum and they all have different needs—they are all vulnerable but how one approaches them and resolves decision-making challenges for them is very different. For example, dealing with somebody very old who has been very disabled by a stroke and is in permanent residential or nursing care is very different from dealing with a 20-something year-old who needs residential care and is on the autistic spectrum. In the work that I have been involved in with younger autistic adults, it is often said that if you get the right person asking the right questions in the right way, those adults understand what the problem is and what the choices are. They have capacity but they have difficulty in knowing how to come to a decision for themselves about the right way forward. There is a world of difference between a professional going through that process and exercise with somebody and dealing with somebody who, as I just explained, might be very elderly or has had a stroke.
Then there is the question of communication. Across this whole spectrum of people are people with communication disorders. How they communicate, whether they need speech and language therapists to assist them or whether they are non-verbal but can still communicate, needs to be taken into account. For that process to take place and for that assessment and decision to be made, it is absolutely essential that time is given.
I know that many Members of both Houses—I am not sure how many—have taken part in training courses run by the Alzheimer’s Society in how to communicate with somebody who has advanced Alzheimer’s. To be frank, it is not all that different from how you communicate with people who are learning disabled or on the autism spectrum. When asking a question or putting information to them, you wait for them to process that information and give them plenty of time before they then express, in whatever way is appropriate for them, an answer to that question or indicate what their preference would be. That is not a cheap option. That type of assessment is not cheap or fast.
Although I understand the urgency to bring down this backlog and treat people individually, we must understand how some of these processes require very skilled people to carry out the assessment. They should be well-trained, experienced people, ideally who know the individual, although that is not always possible. These are the challenges in getting this legislation right.
I totally concur with many issues raised today. Best interests are very important and I am concerned that that phrase is not in this legislation. As someone who holds a lasting power of attorney for health and social care, I am only too well aware that my duties in law as a private individual—not as a professional—are that I should always assess and put that person’s best interests first. If I am doing the job properly, I should notate how I went about the process. Yet we are saying in this legislation that somebody who has that legal duty in respect of another individual does not have to take that into account. They will not be consulted and will not be at the heart of the decision-making as far as P is concerned when assessments and decisions are made. There seems to be a contradiction between two different legal requirements on people in the same Act. I hope my noble friend will address that because I am now very nervous, as somebody who holds this responsibility of lasting power of attorney for another that, somehow, putting their best interests first, which I am legally required to do, will not be taken into account when another area of law is challenging the validity of that responsibility. Again, we must get this right. We cannot leave this as a gap in the process, because it is very important.
Then there are the assessments themselves and the question of training and the quality of that training for the people who carry them out. We should make sure that, even if we save money publicly on reducing the backlog and the numbers, there will be an investment in training for people who currently do not have that training. Certainly, the post-legislative scrutiny committee understood only too well from the evidence that we took a few years ago that there is a paucity of people who really understand the legislation in terms of what they are meant to do as professionals. It was very patchy then, and from what we have seen, it does not appear to be any better now. Nothing has improved all that much.
I want to raise briefly the people who have registered advance decision-making rights to refuse treatment. I am grateful to Cardiff University for its briefing, which sets out the position and explains how this issue is affected by the legislation before us. It states that the Mental Capacity Act enabled people to make ADRTs to refuse in advance specified medical treatments at a time when they may lack capacity to give or refuse consent. The Act created for the first time a mechanism for a person to specify who they would like to make those decisions, which brings us back to lasting powers of attorney. Both provisions were meant to enhance respect for personal autonomy, so it is important that, whatever is in the Bill when it leaves this House, nothing in it should reduce in any way that respect for personal autonomy. Under DoLS there was a “no refusals” test, which meant that an authorisation could not be issued if the purpose of the deprivation of liberty was to provide treatment where the person had made an ADRT refusing it, or which an appropriately empowered attorney refused to consent to on their behalf. This meant that DoLS could not be used to trump the past expression of a person’s wishes and feelings about what would happen when they had had capacity. I hope my noble friend will look again and bring some clarity to this issue. The legislation we are discussing today really is not clear on how those advance decisions will be treated, not only in terms of their relevance but whether they will be recognised as they should be now.
I finish with a quote from evidence we took in our committee on a case that was prevalent at the time and remains a test case—that of Steven Neary. His father sent a letter to the committee. It is worth bearing in mind that we are not dealing just with numbers, money and legislation, but with real people living real lives and for whom there are lasting consequences. Steven’s father, Mark Neary, really fought the fight on his son’s behalf. After he had succeeded, he wrote to say, “Two years on, I still have to deal on a daily basis with the trauma Steven experienced as a result of the DoLS legislation being turned upside down by Hillingdon. It is painful to watch. Two years on, I still have to deal with my own feelings of anger, sadness and guilt that I was not able to protect Steven from the nightmare. Living with his and my feelings—I wouldn’t wish that on my worst enemy. That is why there is still so much to do in making sure that the Mental Capacity Act and DoLS truly protect the vulnerable people that the Act was designed for”. We must get it right this time.