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Mental Health

9.22 p.m.

Lord Ashley of Stoke rose to ask Her Majesty's Government what consideration they are giving to introducing legislation to protect people with mental incapacity.

The noble Lord said: My Lords, the object of this debate is to complain about the inadequacy of rights for people with mental incapacity; to urge that they get all the information, resources and advocacy that they need for adequate rights; and to protest to the Government at their remarkable delay in bringing forward comprehensive legislation on this topic.

The fight for disabled people has a long and chequered history, as noble Lords are well aware. Although much remains to be done, a great deal has already been achieved in terms of legislation and changing public perceptions. The Government deserve enormous credit for those crucial advances.

However, that applies primarily to physical disability. The problems of mentally incapacitated people have been neglected. They have not been given the same kind of attention. As a consequence, there has been drift and delay from the Government on this issue, which has resulted in confusion and lack of clarity.

I do not believe that the Government will argue much with my statements because my noble and learned friend the Lord Chancellor, no less, said:

He also said that the,

    "law fails to offer adequate protection".

Those are two very strong statements. They were made as far back as 1997. It beats me why all of this delay has occurred on a matter that is crucial to vast numbers of mentally incapacitated people, who are desperately in need of progressive legislation. I know that my noble friend the Minister is anxious to do what she can, but she and my noble and learned friend the Lord Chancellor must carry the Government with them and ensure that this legislation is brought forward.

It is thanks to the various voluntary organisations that the issues are being discussed today. I am particularly grateful to MIND, and Rowena Daw especially, for help in putting this subject before the House.

Many people with mental incapacity are denied the vital protection of the law. Yet these are the very people who need that protection most. There are many of them. The figures are staggering. They include such vulnerable people as the 145,000 with profound learning difficulties, the over 700,000 with Alzheimer's Disease, 135,000 incapacitated by accidents, some 100,000 seriously disabled by a stroke and several hundred thousand people with severe mental health problems, such as schizophrenia or manic depression. This group at some point in their lives lose capacity to care for themselves and to make their own decisions. What we need, and what I urge on the Minister tonight, is legislation to give clear authority and

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guidance to a person's family, friends, their doctor and their solicitor, as to how to act on their behalf when they are unable to act for themselves.

That is not much to ask. It is in a sense extending the neighbourhood scheme through the family, friends and professionals such as doctors and solicitors. I cannot understand why such legislation was not enacted many years ago. This neglect is really inexcusable.

No one knows when these people should be allowed to make their own decisions instead of others deciding for them. We simply do not know. Nor do we know who can make decisions for them or over what issues they can make decisions. We do not know who has the authority when they lack capacity. I think the law is an absolute shambles. Successive governments have failed to grasp this nettle and to deal with these problems.

There are specific provisions, I acknowledge, for allowing someone to be appointed with an enduring power of attorney over financial affairs, but the procedures are cumbersome and in some cases unworkable. And there is no provision for powers to be granted for welfare or healthcare. That story is unbelievable, but it is true.

The inadequacy of the situation is, as I say, a standing rebuke to successive governments—not just this one but the one that was in power for so long before—and a cause of distress among the mentally incapacitated. The situation has gone on for far too long. I therefore welcome the Government's announcement that a draft Bill on mental incapacity will be forthcoming, but I note that there is already a draft Bill within the Lord Chancellor's Department. I wonder how long the matter will take. Perhaps my noble friend the Minister can enlighten the House on that when she responds.

The draft Bill dealing with mental health is a tiny step forward for people with mental incapacity. It gives people with long-term incapacity some safeguards, but it is no answer for the majority of mentally incapacitated people because it does not define "incapacity" and applies only to those admitted to hospital. It does not even cover residential care. So there is absolutely no magic there.

So the first thing that we need is legislation that clearly defines mental incapacity, best interests and a general authority to act reasonably. Although these are now part of the common law, the exact scope and definitions are unclear. In view of the uncertainty about where the authority lies, people are hampered from acting. They are afraid to act. They are terrified of going beyond the law. As a consequence, mentally incapacitated people suffer. By defining incapacity the Government will be protecting people who are wrongly assumed to be capable of deciding for themselves. They will also be helping these people to make their own decisions for as long as they are able, without unwanted interference from others. The current government guidance would be more meaningful if it were made legally binding. I hope that the Government will consider that point. We must

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replace the system of enduring powers of attorney that cover only financial affairs with a new continuing power of attorney that gives the appointed person power to make personal welfare and health decisions, as well as financial ones.

By adopting such policies, the Government would give people a greater chance to plan for a future occasion when they may become incapacitated. They would simplify the job of carers and assist them in dealing with day-to-day healthcare and other problems. They would also ensure that decisions made on a person's behalf reflected what that person really wanted, rather than what someone presumed that they wanted. That is a profoundly important point. The Government would provide safeguards for professionals, such as doctors, nurses and social workers, who work with people with mental incapacity. The Government can get rid of the uncertainty that unfairly plagues such professionals.

A new, modern Court of Protection is required to replace the existing one. It is needed to resolve disputes about whether a person has capacity, about the definition of best interests and a general authority to act reasonably. It is also needed to make decisions about finances, healthcare and welfare issues.

The legislation should also provide for independent advocates to be available to speak on behalf of a person without capacity, so that families, friends, doctors and solicitors would have guidance on how to act on someone's behalf. The Government should either implement the legislation that deals, in some measure, with those points or provide for new legislation, which I would prefer. I hope to receive a positive and constructive response from the Government.

Again, I pay warm tribute to the Government for what they have done on disability. They have a proud record, despite my many attacks on them for the shortcomings and the failure to bring Shangri-La to Britain overnight. However, these are real and important issues, covering many thousands of people. They would be a major step forward for some vulnerable people who have been neglected. If good government means anything, it means helping such people. I have great optimism that I will get a positive response from my noble friend.

9.32 p.m.

Lord Pearson of Rannoch: My Lords, I start, as usual, by declaring my interest as the father of a 22 year-old Down's syndrome daughter and as the honorary president of RESCARE, the National Society for Mentally Handicapped People in Residential Care. I shall divide my contribution into two parts: remarks about legislation to protect children with mental incapacity and remarks about legislation to protect mentally handicapped or incapacitated adults.

First, I shall speak about children. Last year's Special Educational Needs and Disability Act is not working as the Government hoped and promised. Your Lordships will recall that the Act gave parents who wanted their mentally incapacitated children to

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go to a mainstream school the right to send them there. When the Bill was going through your Lordships' House in January and February 2001, I and others predicted that it would result in greater difficulty for parents who wanted their mentally incapacitated children to go to a special school. We tried to amend the Bill accordingly, and the amendments can be found in the Official Report for 23rd January 2001 at columns CWH 43 to 47 and 57 to 58 and for 29th January at columns CWH 80 to 84.

Of course, the Government did their best to assure us that our fears were unfounded. In fact, the Minister—the noble Baroness, Lady Blackstone—was quite specific:

    "The noble Lord, Lord Pearson, was particularly concerned about the claim that has been made by some people that the Bill will make it harder for parents to get a special school place for their child. That is not true. We want an inclusive education service to offer excellence and choice and we recognise that some children need the support that special schools provide. We see no reason why the Bill should result in any diminution of that choice or any reduction in the number of special schools.

    I categorically assure noble Lords that the existing right of a parent whose child has a statement to make a positive choice and express a preference for a special school place will be fully maintained. It is important that LEAs listen to what parents want and where a parent wants a special school place and an LEA refuses it, parents can appeal to the SEN tribunal".—[Official Report, 23/1/01; col. CWH 46.]

I trust that your Lordships will agree that that was a pretty firm commitment from the Government that parents of mentally incapacitated children who want those children to go to special schools would not be disadvantaged by the Act.

However, there is now ample evidence that the Government's promises have not been fulfilled, just as some of us predicted. There is even evidence that the tribunals have been influenced against special schools. Indeed, I wrote to the Minister for Education recently with a particularly tragic case, to receive the reply that there is no appeal against a tribunal's decision.

The failure of the Special Educational Needs and Disability Act to protect mentally incapacitated children was amply reported in the Daily Telegraph last Thursday 12th December in a substantial article by that newspaper's respected education correspondent, Liz Lightfoot, and entitled "Parents reveal torment of special needs pupils". I know that the noble Baroness, Lady Scotland of Asthal, who is to reply to this debate is not an education Minister, but I ask her to do her best to make sure that her colleagues in education do read that article, and also the letters to the editor of the Daily Telegraph which followed on 14th December.

The article reveals that children with learning difficulties are threatening to take their lives rather than go through the school gates in the morning. It says that others lock themselves into their bedrooms or run away in order to avoid the hurly-burly of comprehensive schools. It then points out that despite a 40 per cent increase over the past 10 years in the number of children identified as having special needs—from 178,000 to 248,982—the number of schools dedicated to catering for them has gone down from 1,352 to 1,162, and around 100 more are facing closure under plans published by local authorities in England.

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The article quotes Mr Peter Clark, the leader of Gloucestershire County Council. It reads:

    "We are following Government policy on inclusion, an Act which was passed by Parliament".

It seems that parents have become so desperate with this situation that they have set up a special schools protection league. The article ends with a quote from the noble Baroness, Lady Ashton of Upholland, the education Minister who has responsibility for special needs. She says that the Government have,

    "underlined that there remains a continuing and vital role for special schools. The right of parents—where their children have a statement—to make a positive choice and express a preference for a special school place is being fully maintained".

Noble Lords will note the resonance in those words, and the quote that I gave earlier from the noble Baroness, Lady Blackstone, on 23rd January 2001.

If the Government find any article printed in the Daily Telegraph unconvincing, perhaps I could quote from the letter published by that organ from Mr Mic Carolan, head of the excellent Hurst Special School in St Helens, last Saturday, 14th December. It reads:

    "I write as a socialist, and as a special educationalist, with experience as the head of three special schools and an inspector of special schools over three decades . . . Racial and religious differences are legally recognised. Faith schools have a legal right to exist. The talented and gifted are recognised. We have the ridiculous pattern where specialist schools for art, drama, technology and business are encouraged, and yet special schools for very special children are seen as being unacceptable".

Mr Carolan then makes another very telling point:

    "The growth in SEN tribunals is in the area of parents insisting on a place in a special school, rather than insisting on places in mainstream schools. I am working with children who never communicate with adults, who hit, bite, spit, who do not believe in themselves. We are tired of the 'specialist' who never teaches a class, making value judgements about our effectiveness, and I am tired of picking up the pieces for professionals who wait while the child experiences six years of frustration and damaging self-concept, and who then decide that maybe a special school has something to offer".

Not my words, but from a leading SEN practitioner, confirming what as a parent I have been saying to your Lordships for several years.

Before I leave children and move on to adults, I should just say that I am sure that the noble Baroness, Lady Ashton of Upholland, is in good faith, as no doubt was the noble Baroness, Lady Blackstone, before her.

The problem is that what the Government want is quite simply not being carried out at local level.

It is the same problem with adults. The Government have recognised that many adults with mental incapacity, especially those with the more extreme disabilities which are often accompanied by severe health problems, can only with great difficulty and at disproportionate expense be properly looked after under their policy of care in the community. The Government have also recognised that many of the families of such people who cannot make choices for themselves want a place in a village community for their relative.

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In this, the Government are also attempting to meet their commitment to choice, but here again they are being frustrated at local level. A very informative debate about what is happening in one such instance at St Ebba's, Epsom, took place in your Lordships' House on 12th June this year in the name of my noble friend Lord Renton. I would like to record my sincere thanks and those of the St Ebba's families, to the Minister, the noble Lord, Lord Hunt of Kings Heath, and to his colleague, Miss Jacqui Smith, for their tenacity in trying to see that the families' wishes are met in this case. But it is not easy when the local authority, Surrey County Council, brazenly denies that there is any demand for a village community in the face of massive and unequivocal evidence that there is. So here again, with mentally handicapped adults generally, we have the problem that the Government's, parents' and families' wishes are being blocked at local level. We very much hope that the Government will stick to their guns.

I conclude by repeating that RESCARE is not against inclusion; indeed, we support it when it enriches the life of a person with mental incapacity. But that cannot always be the case, especially with the more handicapped people like my daughter. Nearly all of the professionals who take the decisions which affect the lives of people with mental incapacity have no experience of it in their families or immediate circle of friends. So perhaps I may offer them some quiet advice, born of long and uncomfortable experience. That is that you cannot make a mentally incapacitated person normal by making him or her live what you regard as a normal life. You may satisfy your innate fear of mental handicap, but you may not help them. Indeed, you may make them extremely unhappy and bewildered. I am sure that none of us wants to do that.

9.42 p.m.

Baroness Howells of St Davids: My Lords, I am most grateful to my noble friend Lord Ashley of Stoke for introducing this debate. I have listened attentively to what he said and to what the noble Lord, Lord Pearson of Rannoch, said about the existing provision for those persons with a mental health incapacity and of the need for clear legislation.

Because I would want to support any legislation on this matter, I should like to express my fear that any legislation which does not take on board the black communities' culture and special needs would not facilitate the black communities in using those services. So I use today to speak out on their behalf.

I am prompted by a recent report commissioned by the Sainsbury Centre called Breaking the Circles of Fear. The report has been a review of the relationship between mental health services and the African and Caribbean communities. I will confine myself very briefly to a precis of the findings of that report. There are circles of fear that stop black people from engaging the services. The report restates that young black men in particular are heavily over-represented in the most destructive parts of the mental health service, more

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especially in secure services, and that black people generally have an overwhelming negative experience of the present mental health services.

Those communities are least likely to access the primary care/mental health promotion or the specialist community services which might prevent or lessen the mental health problems. They believe that they are getting the mental health service they do not want, not the one they feel would do them much good.

The report states that black people fear and mistrust the services. Staff in those services rarely reflect their culture nor are they even taught anything in their training about dealing with the cultural norms of that group. Instead it is a widely held view that staff are wary of the black community, fearing criticism and not knowing how to respond, especially to black men.

The cycle is also fuelled by the prejudices professionals in the field endure when they are working in the organisations that deliver the services. It is sometimes uncomfortable to listen to the tales of how professionals go to great lengths to undermine the work of psychiatrists who are black. Other health professionals often receive the same treatment. Before anyone tries to deny this by saying that they have a chip on their shoulder, I would say that they do not have a chip but perhaps a whole tree, which is put there by the unconscious racism that often prevails when they try to show that their culture may be different and the treatment may be more useful another way.

The report is thorough and I would like to share its key findings. Circles of fear stop black people from engaging with the services. Black service users are not treated with respect and their voices are not heard. Black people come to the services too late, mostly when they are in crisis. Primary care involvement is limited and community-based care is lacking. Acute care is perceived negatively and does not aid recovery. Different models and descriptions are used and other people's philosophies are not understood. Family and carer involvement is almost always absent. Conflict occurs regularly. Black-led organisations are not valued. The stigma helps to ostracise the patient, and that is never taken into account or given any consideration. Those are the research's findings.

There are 15 recommendations in the report, which I trust the Government will want to consider should they be considering legislation. I recommend the report to anyone who is interested or who has doubts. I want to ask the Government to consider in any future legislation their commitment to diversity, noting the huge gap that often exists between government legislation and the delivery of services.

Black British citizens must share the good effects of any legislation. As a people we are all too aware of the gap between management and leadership. Too often leadership styles have been a brand by which delivery of the laws of the country has discriminated against the opinions and values of the black British citizen—not, of course, in this House. I urge the House to consult the black community as a matter of right in whatever legislation it proposes to protect persons with a mental incapacity.

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9.50 p.m.

Lord Rix: My Lords, I must first declare my long-standing interest in the world of learning disability as president of Mencap, as the father of a severely learning-disabled daughter and as a grandfather of a learning-disabled grandson.

I pay tribute to the noble Lord, Lord Ashley of Stoke— I wish that I could call him my noble friend for he is indeed a noble friend to people with disabilities—for securing the debate and for his admirable speech. I thank him for giving us yet another opportunity to raise this important issue, which is close to my heart. Perhaps I may add a footnote to it.

I remind your Lordships briefly of the history which many of us have not only read but lived. Well into the 1960s, many people with a learning disability had no voice in the decisions of others to place them in large institutions, and then no say in what was done for them and to them in those institutions. Until the 1970s, they had no voice in what happened to them during school age; they were excluded as being unable to learn as well as unable to decide. Having gained the right to go to school, it was another decade or more before some choice of school became a reality—and we have heard from the noble Lord, Lord Pearson of Rannoch, that the problem still exists.

Then at the beginning of this millennium there was yet another beginning for people with a learning disability, the Valuing People White Paper, which enshrines choice, rights, independence and inclusion, all of which could be summed up in the term "decision making". Alas this most basic decision of all is denied the majority of adults with a learning disability, who cannot even decide if and when they wish to leave home as beyond the family unit there is nowhere else for them to go.

If we are to secure the principles of choice, rights, independence and inclusion—and, indeed, to live up to the Human Rights Act—we need legislation, while to deliver these principles we need to work on recognising and supporting communication, decision making and the extension of advocacy.

Regrettably, there is such a long history of people with a learning disability being excluded from decision making, having decisions made for them and having their decisions overridden for no good reason that, without a conscious effort, legislation—while essential—will not on its own set aside centuries of ignorance, fear, prejudice, exclusion and—dare I say it?—brutality.

All of us in your Lordships' House are extremely lucky to be in a position where most of our opinions are taken into account—well, sometimes. Unfortunately, this is not the case for the majority of people with a learning disability who may have difficulties communicating their wishes and are often ignored because assumptions are made about their capacity. Learning disability and communication impairment tend to go together, but it is an assumption not a reality that automatically links learning disability and impaired decision making.

It follows, therefore, that any interpretation of a person's mental capacity and ability to make decisions needs to include consideration of his or her

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communication skills. It is all too easily accepted that some people with social or communication difficulties may appear to be incapable of making choices. They may, however, be fully able to make such choices given the means to express themselves. If we give them a communication passport; if we learn to recognise what they are saying by building trusting relationships which are sensitive to an individual's needs and circumstances; and if we use communications systems and equipment—all available nowadays—which are tailored to their individual needs, anything is possible. With such support and that of independent and informed advocacy, many a person with a learning disability can understand their choices and express their decisions effectively.

However, helping people with communication impairments to understand their choices and to make decisions requires an investment of time, money and skills—from government and carers alike. Above all, though, is the need for legislation in this area, which is long overdue. New legislation on mental capacity would also ensure a more functional approach to decision making. This recognises that a person's ability to make decisions may vary over time and depend on the level of difficulty of particular decisions—such as choosing where to live or how to manage money. It means that individuals would not be prevented from making certain decisions just because they had a medical diagnosis of a disability or illness.

The current law is not just unfair to people with a learning disability but it is also confusing to carers—who at times have to make or help to make decisions for those for whom they care. Currently, it is distressingly unclear who has the legal right to take day-to-day welfare, healthcare or financial decisions. What is clear, however, is that the law needs to clarify what carers can and cannot do. Clarifying who can make decisions will also improve the position of those who have to step in, often at the last minute, to take decisions for someone else.

I am aware that the Government agree with the need for legislation. Ministers in both Houses have expressed their support for such a Bill. I therefore look forward to their proposals. Indeed, consultations and deliberations in this area have been debated over a number of years—about 15 to be exact. There was an announcement last Monday that work will start on legislation in consultation with interested groups. Legislation has been promised by successive Ministers ever since the Government came to power in 1997 but still no legislation has been forthcoming. Still we are promised a Bill as soon as parliamentary time allows—which could mean this year, next year, sometime, never.

People with a learning disability and their carers have found themselves in this cloud cuckoo land far too long. Just across the border, the Adults with Incapacity (Scotland) Act 2000 is already in place. The option to continue doing nothing in the rest of the United Kingdom is really not an option. It would mean the betrayal of too many expectations and the denial of choice, rights, independence and inclusion to

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those who are relying—a little wearily after so much waiting—on the fulfilment of Government promises. We must not fail them.

9.57 p.m.

Baroness Greengross: My Lords, I add my thanks to the noble Lord, Lord Ashley, for securing this debate. I have been very moved as well as interested to hear the eloquent speeches—particularly because they were based on so much personal experience as well as expertise.

If we are to have a just society as well as a compassionate one, we must address the needs of some of the most vulnerable people among us—I will concentrate on older people because I have spent so much of my life working in that field—how we view and treat them; and whether we give them adequate respect and understand their views—because they remain adults, however frail they may have become.

I demonstrated my feelings about the importance of those issues when I secured a dinner break debate last May on the future of the Public Guardianship Office, about which there was much concern. Those issues are of growing importance, partly because of our ageing population, about which we are hearing so much these days, in other aspects of life. Most people who have mental incapacities and problems are older people.

We all realise that the sort of incapacity from which such people suffer is often a slow process of decline. The issues are complex, resulting from very difficult and different conditions such as the dementias. The capacity of people as those awful conditions progress is difficult to grasp. Decision-making capacity can fluctuate. People can make adequate decisions sometimes, then not be able to do so, then be able to do so again.

Without a legal framework, it is extremely difficult to take these situations on board, assess people adequately and arrive at decisions. I agree with the priorities that have been expressed. Mental incapacity is a very important issue. We are all extremely disappointed that no legislation has yet been published on the subject. As the noble Lord, Lord Rix, mentioned, it seems odd that the Scottish Parliament, within a year of its being established, managed to legislate on this matter: the Adults with Incapacity (Scotland) Act was passed in the year 2000.

The 1999 White Paper was entitled Making Decisions. That is what we want Her Majesty's Government to do. A Green Paper had been published in 1997 entitled Who Decides? But at present we are not very sure about who makes the decisions, because the law is so cloudy and out of date. For everyone who works with people with impaired mental incapacity, and for the people themselves, we need a legal definition of "capacity"; otherwise our system will not have the capacity itself to work in the best interests of those whom it is designed to protect. We must have clarity.

I want to concentrate on the day-to-day small-scale activities of someone who has mental incapacity to show why the law must be updated soon. The parliamentary timetable still means that such

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legislation cannot be implemented for some years—no earlier than 2004 or 2005. As I said, the majority of people affected by these conditions are very elderly; they cannot wait that long.

This is not merely about the big headline issues of advance directives or substitute decision-making; it is about the day-to-day financial and welfare issues, where people have very few rights—demanding action on appointeeship, power of attorney, the role of the Public Guardianship Office and so on. I have to agree with the noble Lord, Lord Ashley, that it is somewhat medieval that the priority is still that such an attorney can act over issues of finance but not over issues such as health or welfare. That is appalling. It must be dealt with quickly.

I accept that consent in health and social care is a difficult and vexed area in which to legislate. But that is no excuse for inaction. These matters must be dealt with in a reasonable and sensible way which leaves room for a court to intervene when there are differences of view in families or among carers and where other people close to the person concerned disagree fundamentally. These are difficult matters. However, it seems to me that the Law Commission's proposals are sensible, and I believe that the Government feel the same way.

I conclude my remarks with a reference to the impending reform of the Mental Health Act 1983. In an ideal world we should have an incapacity Bill giving us clear definitions, limits and so on, followed by a re-draft of the mental health reform Bill. Indications are that it will be the other way round. But it is vital to define capacity and mental health issues soon.

If the parliamentary timetable is to blame because of the shortage of legislative slots, perhaps the suggestion that I made last month during the debate on the gracious Speech could be reconsidered; namely, consideration could be given to combining the two Bills into one Bill with two distinct parts. Both deal with different aspects of the condition of the human mind, and we see many examples of legislation crossing departmental boundaries. An example is the nationality Bill, which contains educational elements. Sometimes, Bills cover quite separate issues within one department's remit, as some of the health Bills have done. If joined-up government and cross-departmental collaboration are high priorities for the Government, would not a bit of joint working between the departments concerned—the Lord Chancellor's Department and the Department of Health—be a good thing? Indeed, would it not serve the best interests of some of the most frail and vulnerable people? Perhaps we could then make recognition of their needs a reality—recognised in our legal system.

10.5 p.m.

Baroness Finlay of Llandaff: My Lords, I, too, am most grateful to the noble Lord, Lord Ashley of Stoke, for instigating this important debate about protecting people with mental incapacity. I wish to address the importance of mental incapacity from the standpoint of the clinical need to protect vulnerable people when

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they are patients in receipt of care. I declare an interest as a clinician who looks after terminally ill patients, and as having two children with severe learning difficulties in my extended family.

In all I say, it must be borne in mind that I fully recognise everything the noble Lord, Lord Pearson, said. When people are physically ill, those with learning difficulties are especially vulnerable because of the environment in which they find themselves. Clinically, the problem is that capacity and incapacity are not absolutes. They vary with time. They may progress or improve. Plasticity of the brain means that, following an insult such as a stroke, people may recover quite a lot of function with time. The other difficulty is that capacity can fluctuate rapidly. For example, with an infection, someone with moderately impaired decision-making can rapidly find it extremely difficult to cope with new information.

A person's capacity depends on the size of decision to be taken. To give a simple example, take an elderly lady who has a small degree of renal failure but who functions well in her own home. She develops a urinary tract infection and has dysuria; that is to say, pain on passing water. She also becomes confused. She can understand the decision to take antibiotics and can quite safely be treated. But, if she develops a renal abscess, she may not be able to fully understand all the implications of having surgery on that kidney, of having that kidney removed and potentially going on to dialysis. She can understand a set of risks at one level but cannot understand all the implications of a larger, more complex decision.

As the noble Lord, Lord Rix, said, the ability to communicate is crucial to the concept of capacity. The clearest example in recent times is that of Jean-Dominique Bauby, the editor of Elle magazine, who had a massive stroke and locked-in syndrome. It was assumed that he was unaware of what was happening around him because he was completely unable to communicate, until a speech therapist noticed that he had one eye movement. With that single eye movement, he was able to communicate and to dictate a whole book, The Diving Bell & the Butterfly, which I have asked to be compulsory reading for all our medical students. It is an astounding book, which gives insight into the problems of someone who is completely locked in, unable to communicate but aware of everything that is happening.

In my own clinical practice, I have had patients with neurological conditions who were assumed to be incompetent to take a decision because they could not communicate it. But, when I have spent time with them, sometimes an hour or more, it has become evident that they fully understood; they just could not communicate. Their refusal of treatment was a very competent decision.

The concept of global incompetence, however, is very dangerous because it cannot be proven and may only truly coexist if someone is effectively brain-dead. Put at its simplest, the concept of capacity refers to the patient's ability to understand the nature and purpose of the recommended treatment, including the

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consequences of having or not having it, and the ability to reason using that information. As I said, the difficulty is that competence may be impaired; for example, by drugs. Midazolam is a drug that is commonly used clinically because it calms down anxious people; but on the streets it is the date-rape drug. The person sounds completely compos mentis, but after the drug has worn off he will have no recall of what he said, what has happened, or, of the decision that he might have taken; and, indeed, might have appeared to communicate properly.

Another common clinical condition is depression, which alters the patient's perception. The person may have a very black and pessimistic view of his future. He may feel that any treatment for him is completely pointless and that his life is worthless, until he is treated. It must be remembered that 20 per cent of medically-ill patients have a treatable depression. Sadly, not that number actually get their depression either recognised or treated. Indeed, one in four of the population has had a mental disorder at some time, many of which have been depression.

So where is that important? If one considers an advance statement, or an advance refusal of treatment, it becomes crucial. When you are depressed you have a different view of the world. Your circumstances and priorities change. Therefore, any advance statement must be renegotiated at the time when a new decision is to be taken so as to ensure that it is still valid. The other problem is that an advance statement made at one time when a person was deemed to be competent that is now looked at when he is deemed to be incompetent may have become time expired; it may not apply to the clinical situation that now has to be faced. Moreover, there may be a new directive revoking the old one that is not known, or which is actively withheld from the clinician.

How many of us have had a member of our family to whom we felt obliged to be kind, because it was probably his last Christmas—yet many years later that relative is still alive and going strong? But what if that person has a fixed-term life insurance policy, has previously written a statement to the effect that he does not wish any treatment in the event of deterioration and then develops a treatable, incidental complication—such as a urinary tract infection—that makes him confused? The doctors looking after that person may not know of an advance statement, or, if one is presented, they may not know whether it has been superseded by another statement. They know that the condition is treatable, but they may not know about the life insurance policy. They may feel that relatives who place pressure upon them, and claim to be acting in the person's best interests, are not acting in his best interests.

I should like to illustrate that situation with a short example from my own clinical practice. At present, any document presented is an expression of the person's wishes and must be renegotiated and subject to the "best interest" principle. The latter adopts the patient's perspective. I know that clinicians come in for a lot of criticism, but the one good point is that they

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are impartial: they do not stand to gain materially, unlike the relative who may inherit when the patient dies.

It is important to remember that the autonomy of one person cannot override the autonomy of another. But autonomy can exist only if it is respected. Any legislation must ensure that every effort is repeatedly made to ascertain a person's wishes and that material is presented in the most understandable way. As the noble Lord, Lord Pearson of Rannoch, said, it must be done in an environment in which the person is comfortable. It must also be free from any possible coercion by anyone who may have a vested interest. A person with a vested interest will be someone who stands to gain materially in any way.

As I said, I had such a situation in my clinical practice. A lady aged 59 was very ill. Her family appeared to be very concerned about her pain and constantly asked for her diamorphine to be increased. However, we remained unconvinced that her pain was really that severe. In fact, the patient declined increasing doses of diamorphine. Her 60th birthday arrived and was passed with minimal celebration, after which the family visited very little. She became depressed and spoke to one of the night nurses, explaining that the problem was that on her 60th birthday, her fixed-term life insurance policy expired. The family would not now inherit what they thought they would if she had died, and if her drugs been duly increased.

That is a sad story, but I am afraid it is human nature. It is important not to use mental incapacity or concepts of advance statements as a convenient, back-door way of allowing the introduction of euthanasia in any form. Legislation must presume in favour of competence, and such presumption must be overturned before someone can be deemed truly incompetent to take such decisions.

10.15 p.m.

Lord Goodhart: My Lords, the noble Lord, Lord Ashley of Stoke, is to be congratulated on raising, not for the first time, extremely important issues on the subject of incapacity. He has had universal support from those who have spoken—certainly from the noble Lord, Lord Rix, and the noble Baronesses, Lady Greengross and Lady Finlay. Although the noble Lord, Lord Pearson, and the noble Baroness, Lady Howells of St Davids, spoke on slightly different, although related, issues, I have no reason to doubt that they would entirely endorse what the noble Lord said.

We on these Benches entirely agree with the noble Lord, Lord Ashley. We believe that the law relating to incapacity is in urgent need of reform. The Law Commission report of seven years ago, in 1995, made many sensible suggestions for reform. The Government published a discussion paper in December 1997, but we are now five years on from that time and still nothing has been done. We greatly regret that the Queen's Speech contained no proposal for a new mental health Act in this Session, covering the reform of the law of capacity, although we had been led to understand until quite shortly before the Queen's Speech that such a Bill would be included.

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We want a radical shake-up of legislation and the institutions involved in dealing with those adults for whom others assume legal responsibility on the ground of mental incapacity. It is one of the most sensitive and contentious areas of social policy, involving fundamental personal rights, issues of personal welfare, and sometimes even life and death decisions. It concerns the duty of government to protect and enshrine in law the rights of the most vulnerable members of our society.

The Government have failed to follow through their early promises on law reform in this area. Many aspects of the current law are no longer compatible with the Human Rights Act. The Law Commission report concluded:

    "the law as it now stands is unsystematic and full of glaring gaps. It does not rest on clear or modern foundations of principle. It has failed to keep up with social and demographic changes. It has also failed to keep up with developments in our understanding of rights and needs of those with mental disability".

In effect, people who are deemed to lack capacity have no legal rights; they become non-people. That position leaves the most vulnerable—often elderly adults—open to abuse. That is made possible, in part, by the fact that people without capacity are largely hidden from public view. They may be in care and in residential home settings, incapacitated in intensive care, sectioned under mental health legislation or under the charge of carers or relatives who have power of attorney. There has never been comprehensive research on how many people in these situations have their legal rights suspended because by law they lack the required "mental capacity" to make decisions for themselves. Our approach is for a fundamental reform to give all those assessed as lacking capacity new rights to maximise their own preferences on how their daily lives should be managed and experienced, and to redefine radically the way in which incapacity is treated in law.

We propose that the principles and methods used to define and assess mental capacity should be fundamentally reconceived so that simplistic tests, such as naming the Prime Minister or subtracting seven from 100, are not applied by doctors and lawyers in an all-or-nothing way and so that partial capacity is recognised and utilised. As the noble Baroness, Lady Finlay, pointed out, capacity very much fluctuates and people can have capacity to take some decisions even if at the same time they lack capacity to take others. For example, the capacity to enter into a complicated financial transaction is obviously very different from the capacity to maintain a life at home by going out to a local corner shop and buying the food which they will then cook to look after themselves.

New legislation is needed also as a basis for a code of practice to support practitioners. It is necessary for those caring for people who lack mental capacity to have a general authority to "act reasonably" in order to protect people. However, there should be certain restrictions on the general authority to act reasonably—for example, force should never be used—and there is a class of decisions which can only

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ever be taken by a person acting for himself or herself, such as consenting to marriage or divorce or to sexual relations.

We also propose that the Court of Protection should extend its jurisdiction beyond its present somewhat Victorian jurisdiction which is concerned almost entirely with the protection of property rights. The extension of the jurisdiction should be a key plank of new legislation. Too often, relatives and carers find themselves in a legal maze when someone ceases to be able to be responsible for themselves. We also propose that new continuing powers of attorney should be introduced to replace the present enduring powers of attorney. These continuing powers of attorney should be extended to cover health and welfare as well as financial issues. They should be regulated through the Court of Protection's jurisdiction. There should also be tighter regulation of informal mechanisms of taking decisions on behalf of someone else, such as appointeeships, which are all too often open to abuse.

We also believe that where an individual with capacity has made clear instructions as to anything to be done or not to be done when they are without capacity, these should trump the views of relatives, nominees and statutory services. We therefore propose a statutory scheme of advance directives, an extension of the principle of the "living will", as anticipatory statements of intent which should be legally binding on the parties who subsequently become involved in decision-making on their behalf.

Finally, we believe that new legislation could and should include specific statutory torts and criminal offences covering the abuse of a vulnerable adult. Currently there are no such specific provisions on the statute book, at least in part because the extent of problems such as elder abuse has not been recognised.

I am very happy to give our support to the noble Lord, Lord Ashley of Stoke.

10.24 p.m.

Lord Astor of Hever: My Lords, I congratulate the noble Lord, Lord Ashley of Stoke, on introducing this very important debate. I agree with him that the problems of the mentally incapacitated have been neglected.

There have been some very well-informed speeches tonight. I share the concern of my noble friend Lord Pearson of Rannoch about special schools. I very much hope that the Minister will pass that on to education Ministers. In doing so, I declare an interest as the father of an autistic daughter now at a special school where she is thriving after many, many difficulties.

The Government stated their policy position on mental incapacity in the 1997 consultation paper, Making Decisions. However, the only commitment forthcoming on this issue is that they will introduce legislation "when parliamentary time allows". Like other speakers, we believe that, five years on, the Government should take the opportunity to introduce legislation as soon as possible.

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We are pleased that the Lord Chancellor's Department is pursuing work on mental capacity including beginning to look at drafting a Bill. That work also includes good practice guidance for professionals, which was recently published for consultation, and a consultative forum on mental incapacity.

However, as the noble Lord, Lord Rix, said, concern remains that a Bill to afford protection for some of the most vulnerable people in society will not be given the priority for legislative time that it clearly deserves. I also look forward to clarification of the Government's intentions from the Minister.

The law assumes that every adult has the mental capacity, or is competent, to make their own decisions if given the information, support and time to make their own choices. However, the law does not define capacity and we do not have a legal definition of when someone does not have the capacity to make their own decisions. This means that although very few people are totally unable to make any decisions, those who may need support to make decisions, or who are able to make some decisions and not others, are not adequately protected by the law.

People with autism spectrum disorders may have difficulty making and communicating decisions across a range of every day activities, from what to eat to how to spend their money. More profound decisions about where they live or what work they may be suited for may be taken for them as a matter of course. The National Autistic Society would like to see new legislation to ensure that people with autism spectrum disorders are supported to make as many decisions as possible and also to give their carers a legal right to have a say on decisions taken when they are unable to decide for themselves.

There does need to be greater legal protection for adults without mental capacity. Similarly, adults who have difficulty making or communicating some decisions must have a legal right to the support they need to make as many decisions as possible for themselves. It is particularly important for people with autism spectrum disorders that the proposed new legislation on sexual offences against people with a mental disorder includes a comprehensive and workable test of capacity.

As has been pointed out, the law in England and Wales lags behind that of Scotland where the Adults with Incapacity (Scotland) Act 2000 defines incapacity. The law here is unclear, inconsistent and fails to protect a person's right to make their own decisions. It fails to protect people from abuse when they cannot make their own decisions as a result of disability, illness or injury and has not kept up with changes in attitudes and understanding; for example, towards people with learning disabilities, as the noble Lord, Lord Rix, pointed out. Nor has the law kept up with advances in treatments and care which mean that people with Alzheimer's Disease are diagnosed earlier and remain independent for longer. There is also now

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new legislation—the noble Lord, Lord Goodhart, mentioned the Human Rights Act—that the current law on decision-making does not take account of.

Furthermore, while it should be assumed that adults have the capacity to consent and that no one can consent on their behalf, in practice the principle is confused. For example, there have been cases where people, because of assumptions made about an individual's capacity, have been asked to give consent about an older relative's medical treatment. That denies people their basic right to make choices, and demonstrates the confusing situation faced by professionals and carers when dealing with the consent process.

The current legal situation does not provide people with adequate safeguards, even when an attorney can be appointed to make decisions. For example, a person might enter a care home and another person might be allowed to deal with their finances without official authority from the individual, the local authority or another official body. That demonstrates that, although there is legislation relating to finances in the enduring power of attorney, stronger protection measures are needed.

The cases of the Crown and Bournewood Community and Mental Health NHS Trust ex parte L highlighted the loophole in current legal protection for people with a mental disorder who lack capacity to consent to treatment and are informally detained in hospital. Section 131 of the Mental Health Act 1983 permits doctors to detain patients in hospital on the basis of common law without recourse to the safeguards in the Act. In this case, the plaintiff L was kept in hospital and prevented from seeing his carers and those closest to him for almost four months—far too long.

The current legal situation in England and Wales, as set out by Lord Justice Steyn in the House of Lords judgment, is that people who lack capacity to consent to treatment can be informally detained indefinitely on the opinion of a single doctor. There is no right of appeal for relatives or carers on this decision, nor is it subject to the review processes of the current Mental Health Act. Although the Government have published a draft mental health Bill that goes some way to addressing those concerns, those who have campaigned on L's behalf feel that the proposed new safeguards would have offered him little protection.

Legal protection for all people with impaired mental capacity would be provided if the Government implemented the policy position set out in their policy statement, Making Decisions. I urge the Government to give priority to introducing legislation on mental capacity. If possible, that should be done at the same time or, as the noble Baroness, Lady Greengross, suggested, as part of the proposed mental health Bill.

10.33 p.m.

The Parliamentary Secretary, Lord Chancellor's Department (Baroness Scotland of Asthal): My Lords, I welcome the opportunity to have this debate, and thank all noble Lords who have participated. I particularly thank my noble friend Lord Ashley of

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Stoke not only for introducing the debate but for his kind acknowledgement of the efforts made by the Government to address the issue. Of course, I acknowledge the frustration that he feels, and that others have expressed, such as the noble Lord, Lord Rix, about the length of time that we have journeyed together towards this point.

We have had some moving contributions in today's debate, and I take the opportunity to thank all who have participated. They have all demonstrated not only their expertise but their special and personal experience of the difficult issues faced by those labouring under disability and by their carers and families. I mention particularly in that regard my noble friend Lord Ashley, the noble Lords, Lord Pearson, Lord Rix and Lord Astor, and the noble Baroness, Lady Finlay.

I share the concerns that have been eloquently expressed this evening; we all share a common purpose. I have no hesitation whatever in saying to my noble friend Lord Ashley that the Government are sensitive to the fact that the law in this area has developed in a piecemeal fashion and does not always offer sufficient protection either for mentally incapacitated adults or for those who look after them. With that in mind, we recognise the importance of creating a new statutory framework within which decisions can be taken on behalf of adults without capacity.

We understand the concerns and anxieties expressed by my noble friend Lady Howells about addressing the needs of all those who suffer from mental illness incapacity or disability, and the special demands of culture and ethnicity in that regard.

On 9th December 2002, my honourable friend Rosie Winterton announced to the mental incapacity consultative forum of the Lord Chancellor's Department that work has begun on producing a draft mental incapacity Bill. I say to my noble friend Lord Ashley and other noble Lords that at this stage we cannot commit to when it will be published, nor has the situation on securing legislative time changed. However, this is an important first step to readiness. The draft Bill will be based upon the policies set out in Making Decisions and will use the draft Bill prepared by the Law Commission in 1995. That gives us a very good starting point. I am sure that noble Lords will agree that time spent on preparation will enable us to focus on what the legislation should look like.

I say straight away to the noble Lord, Lord Pearson, that the Law Commission's recommendation, accepted in the Government's policy statement, "Who Decides?", was that new statutory provisions should apply to those aged 16 or over. Other government departments, such as the Department for Education and Skills, are involved in our consultative forum. It is important to discuss how any new legislation would interact with current legislation relating, for example, to special educational needs.

The draft Bill will not just be another academic piece of legislation. It will provide common-sense guidance to those working with people with impaired capacity, making sure that good practice is embedded

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into every decision. We will ensure that implementation is carefully and comprehensively managed so that the legislation makes a real difference to the lives of some of the most vulnerable people in our society. To do that takes time and we have used the time, since 1999, to good effect by identifying and working on projects that can make a difference now, as well as paving the way for legislation.

By working closely with stakeholders and listening to what they say—their concerns and problems—we can get it right the first time. Working together buys in the support that we need to make the legislation work on the ground. We will look with care at the experience in Scotland and try to learn from everything that is currently being done there.

We are all in agreement that such legislation is much needed to ensure that people lacking capacity retain as much autonomy as possible in making decisions in their everyday lives while also being protected by effective safeguards. The Government are all too aware that the current situation is far from satisfactory. There is a great deal of confusion as to how decisions should be made on behalf of those without capacity, leading to a lack of legal protection for both vulnerable incapacitated adults and those who care for them. That point was made by virtually every noble Lord who has spoken.

We are very aware that legislation must meet the many and diverse needs of everyone in our society, since it is a fact that almost all of us will suffer from incapacity ourselves at some time in our lives or help to care for someone who does. We are looking to empower and protect those who are born with impaired capacity, those who lose capacity suddenly through a head injury, those who develop a mental disorder and those who lose capacity in later life, a subject upon which the noble Baroness, Lady Greengross, spoke so powerfully.

A draft Bill will be welcomed by the majority of people as a positive way of empowering and protecting those with mental impairment or incapacity. Some people, as indicated by the noble Lord, Lord Astor, will have reservations about some of the proposals for reform. They may have concerns about the proposals for healthcare, or may disagree about how the legislation will meet the needs of those with impaired capacity. But I am pleased to say that most people appear to be broadly supportive of the need for legislation on mental incapacity and how it can make real changes to the lives of many vulnerable people for the better.

As I have said, we have been doing work to make changes for the better now, which will also put us in a better position to take forward legislation. Working with stakeholders we have listened to their concerns and identified, with them—it is important to say that—what can be done to make the present situation better.

We have already increased physical accessibility to the law by establishing a regional Court of Protection in Preston. Having a local hearing makes sense on many counts. It saves time, costs and, above all,

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reduces the stress that a court appearance inevitably involves. This regional court has been successful and there will be other regional courts set up for hearing some mental incapacity cases. However, we must be sure of a consistent approach to the work. We must have good electronic links and supporting administration for the regional courts. So there is much to do—identifying and training judiciary and staff, developing procedures, installing links and heightening awareness as to the existence of these regional courts and the limits of their jurisdiction.

As the noble Lord, Lord Astor, said, we are publishing a series of new guidance leaflets based on existing practice and law and have recently finished a consultation exercise on those issues. These leaflets are both for people who have to make decisions on behalf of others and for people who want to provide for future help in decision making on their own behalf, should the need arise. These guidance leaflets provide a starting point for the code of practice that will support the legislation.

The noble Baroness, Lady Greengross, raised the issue of how we will work together with our colleagues from the Department of Health. I can reassure the noble Lady that officials continue to work with colleagues in the Department of Health to ensure that any mental health legislation is consistent with the definitions of making decisions, and that legislation in any area that impacts on people with mental incapacity works in harmony with the proposed draft mental incapacity Bill. We shall do everything in our power to make sure that legislation is brought forward as quickly as possible. But, as noble Lords will appreciate, it is not always within our gift.

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The proposals for making decisions will allow financial, personal, welfare and healthcare decisions to be made on behalf of mentally incapacitated adults. The current enduring powers of attorney apply only, as noble Lords have said, to financial decisions. But people with mental incapacity will be able to plan for a time when they may lose that capacity, by appointing another person to make those decisions for them under a continuing power of attorney. Perhaps I may say how very cogently I thought the case was put by the noble Baroness, Lady Finlay, about the real difficulties experienced with fluctuating capacity and the need continually to ensure that the last expressed view is actually the real view communicated by the person who may from time to time suffer from that incapacity. We are determined that our proposals should not lead the way—through the back or any other door—to euthanasia. The noble Baroness may be confident that that is not our intent.

We have come a long way. In closing, I must say that the forum that we have set up provides a useful setting for operational and policy discussions. The practical experiences and expertise of forum members, many of whom work with or care for vulnerable adults, will help us to build appropriate safeguards into a framework that ensures that decisions are made in a caring and transparent way and are focused on safeguarding the best interests of all involved. Forum members will also ensure that we are constantly reminded of the practical considerations that the implementation of future legislation must address. All the issues raised by the noble Lord, Lord Goodhart, will be addressed and discussed together, with the forum as one of the vehicles that we will be able to use.

I thank all noble Lords present. I almost feel like saying, "We few, we precious few". People in the House tonight have been on this journey for a long time, but we have been in the very best of company.

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