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Baroness Chapman: My Lords, as one of the latest recruits to this House, I would like to express my heartfelt gratitude for the help and support of your Lordships and the staff of this House. In every other new environment that I have entered, either as a volunteer or an employee, once there I had to work on being accepted. It was a little confusing, but a true revelation, to discover that membership and acceptance are one and the same in this wonderful place.
I am a Yorkshire lass, born and brought up in Leeds. My background is very different to that of most people in this House. My education began at home, tutored by my parents, and later supported by a tutor provided by the local education authority for three hours a week. When I was eight, I entered segregated education, then mainstream further education college, and then university. That was followed by unemployment. While out of work, I volunteered as an IT tutor at a centre working to rehabilitate young offenders. That soon developed into an almost full-time voluntary post, as I also helped with job applications and benefit claim forms, taught some numeracy and literacy skills and worked on social skills in given situations.
It was with regret that I left after seven months to take up full-time employment in a clerical post with my local council. Over the next few years, I worked my way up within the council until I attained a tutoring position in an adult education centre. I worked at different projects with a variety of people from a broad spectrum of the community, and I continued to enjoy teaching for several years.
I had to give up full-time employment about 12 years ago due to several severe leg fractures, which failed to heal. From there, I began acting as an advocate for people who felt unable to deal with issues themselves. That led me to voluntary working with Habinteg Housing Association, Leeds Centre for Integrated Living and Leeds United association football club. I became more involved in disability rights, particularly focusing on independent living issues and the right to access work and leisure facilities, including sports stadiums. As I
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gained more knowledge and experience, I was asked to join committees at local, regional and national levels to promote social inclusivity and disability equality.
Without descending into the realms of controversy, I have to say that I have grave concerns about the Bill. People are born and they die; those are the only two certainties in life. I have no doubt of the good intentions around the introduction of the Bill, but we must not lose the basic premise of a right to live in order to allow people the right to die. Although I can accept some of the arguments for sections of the Bill, it is virtually impossible for legislation to allow such measures in a way that is not open to the abuse of a licence to kill.
Assessment of "best interest" and "burdensome" should not be medical-model based, and should not focus only on the negative aspects of a person's condition. A situation that appears intolerable to people who are fit and well may be more than outweighed by the positive experiences of the patient. They have family and friends, relationships that are part of them being a rounded individual and not simply a condition or impairment. There is a clear line between increasing pain-control medication that may hasten death and withdrawing support that causes death. That line is the quality of life of the patient, however little life remains.
I feel that at this point I should declare an interest. If the Bill had been passed 43 years ago, I would not be here. My parents were told that I would be blind, deaf, unable to communicate and have no noticeable mental function. Doctors and practitioners do get it wrong. We need to ensure that people have the opportunity to prove the medics wrong. Although protected from the Bill as a child, there would have been two or three occasions after childhood where, from a purely medical perspective, treatment could have been withdrawn from me. The Bill ignores the fact that people have a basic right to life; that issue cannot and must not be ignored.
As I feel that I am beginning to cross the line into controversy, I will end by sayingI hope that noble Lords agreethat our first duty to the people of this land is to keep them safe. The less able and more dependent they are, the greater is that duty. As it stands, the Bill does not keep people safe.
Lord Rix: My Lords, as a Yorkshire lad I must congratulate the noble Baroness, Lady Chapman, on her remarkable and moving maiden speech, garnered no doubt from many years of personal andI would hazardheartbreaking experience. We welcome her most warmly to the House, and to the Cross Benches. Her wisdom and personal commitment will be of the greatest benefit to us all, and we look forward to many more contributions in the years to come.
I welcome the Bill most warmly, especially given that, as stated by the noble and learned Lord the Lord Chancellor, it has been 15 years in the making. As it is an extremely serious and important Bill, I shall refrain from any jokes about gestation and the length of time that successive governments have taken to bring it
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before us. I pay tribute to the noble Lord, Lord Carter, under whose excellent chairmanship I sat on the Joint Committee which scrutinised the draft version of the Bill. I also declare an interest as joint chairman of the All-Party Group on Learning Disabilities and as president of Mencap.
There are three crucial issues to be addressed if we are to draw the protracted search for clearer law and better practice to a successful conclusion. The first is striking the right balance between autonomy and protection. I venture to suggest that we are fairly close to getting the balance right. The heat generated by the issue may surprise some people, but it should not surprise those who have seen people's views ignored and their lives taken over by others because they have a learning disability. Nor will it surprise those who have known people suffer unnecessary pain and even die because they could not consent to the treatment that they needed.
The second issue is rather like the parable of the tares among the wheat. End-of-life decisions are a very small part of what the Bill is about but, as suggested by the servant to the householder, it has been very tempting to weed them out. I am relieved that that has not happened. The third issue is independent advocacy, which is crucial because it goes to the heart of supporting autonomy and providing protection for vulnerable people. It is an issue which has been around since the Disabled Persons (Services, Consultation and Representation) Act, known in the disability world as the Tom Clarke Act, which I should stress has remained only part-implemented for nearly 19 years.
I pay tribute to the Government for not abandoning the Bill on the grounds that they may face another heated debate on euthanasia and independent advocacy. The business of government is to do the right thing, even when that is not an easy option.
I turn first to the debate around end-of-life decisions. It was something that we wrestled with for quite some time in Joint Committee before arriving at the conclusion that the Bill should permit the making of advance decisions to refuse treatment, and should permit the making of lasting powers of attorney, albeit with various important safeguards. I will leave it to others to decide whether our Joint Committee was right, and I can only hope that the government amendments in that area of concern will be a compromise acceptable to all engaged in the debate. However, I must declare a personal interest, for both my wife and I have written so-called living wills. I would welcome a detailed pro forma being inserted into the code of practice to assist laymen like me on the appropriate form, wording and content that living wills should take.
The Bill is fundamentally about empowering people to make as many decisions as they can or to be as big a part of the decision-making process as possible. There is a powerful enabling ethos at the Bill's heart, and it is for that reason that I have been supportive of it throughout. Yet there is a clear policy gap between what the Government hope to achieve and what will actually be achieved through this legislation, particularly in the realm of independent advocacy.
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It was that policy gap which the Joint Committee tried to fill by recommending that the Bill include a provision to meet "all reasonable requirements" for independent advocacy services for incapacitated adults. I am therefore extremely pleased that independent advocacy is now in the Bill, albeit disguised as independent consultees, and that the Government are committed to establishing nationwide guidelines, standards and training for that vitally important service.
It seems clear that the Government now want independent consultees to perform the same role as disabled people want them to performthat of a well trained, highly skilled independent advocate able to use their expertise and knowledge of the health and social care system to ensure that the wishes and feelings of a person lacking capacity are properly taken into account in best-interest judgments. "Advocacy plus" was the term used repeatedly in Committee in another place. Given this, I hope that the Minister will now accept that, having changed the function to one of "advocacy plus", we should now come clean and call it "advocacy" on the face of the Bill. I hope that the Minister will forgive me if I use the words "advocate" and "advocacy" from now on in the hope that the Government will follow my example.
However, while the £6.5 million to resource this new advocacy service is very welcome, in practical terms it amounts to little more than one extra independent advocate per local authority. The Minister will know that I wrote to her recently saying that I would not be pressing for a right to an independent advocate in all circumstances but I did not mean for the Government to be as cheese-paring as that.
When even the unwaveringly diplomatic Disability Rights Commission says openly that the Bill needs more independent advisers for it to work, I believe that the Government need to listen very carefullyespecially when the DRC advice is echoed by the Making Decisions Alliance, which embraces the majority of all major disability organisations, by the National Centre for Independent Living, which is a member of the I Decide coalition and, perhaps above all, by my fellow chairman of the All-Party Group on Learning Disabilities, Tom Clarke, who, with his amendments at Report stage in another place, urged the Government to broaden the range of situations in which an independent advocate could be involved so that more vulnerable people could benefitfor more vulnerable people must benefit. I was pleased to hear the noble and learned Lord, Lord Falconer, say in his introduction that regulatory powers would be taken to extend the situations which could involve independent advocates.
Disability campaigners are, on the whole, reasonably realistic and, as indicated in my recent letter to the Minister, they just about accept that an unlimited range of situations in which an independent advocate could be involved is, at this stage, beyond the bounds of possibility. However, like Oliver, they are asking, as I am asking, the noble Baroness, the Ministerthe mistress of the workhouse, as it werefor more, especially on the face of the Bill. Without that extra bit of life-enhancing gruel, the disappointment of the disability movement
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would be intense. It feels strongly that now that the Government have made it clear that independent advocates will need to be highly skilled and experienced practitioners, it is vitally important that people who lack capacity do not miss out on this invaluable first rate assistance simply because they have family or friends to help them to express their wishes and feelings.
Your Lordships might recall that the original Bournewood case, to which several noble Lords have already referred, concerned a gentleman who had a substitute family but, for whatever reason, did not have anybody who could immediately arrange a hearing on his behalfa hearing which could possibly have avoided much of that which followed. While I accept that advocacy alone would not have solved what has become known as the "Bournewood gap", it could certainly offer part of what is needed to fill that gap.
The Minister may argue in her response that family carers would not want an independent advocate to become involved in helping their loved ones and, being a parent myself, I have some sympathy with that point of view. It should be possible to agree that having a family carer does not rule out having an advocate as well and I am sure that there are many parentsespecially the elderlywho would welcome a considerate and knowledgeable supporter. No doubt there will be much discussion on this rather delicate issue during the passage of the Bill through your Lordships' House, not least around the crucial role for citizen advocacy and I trust that this service will also receive full Government support and encouragement.
This must rank as one of the most misrepresented Bills ever, and that misrepresentation helps to explain its lamentably slow progress. If, as I hope, the Mental Capacity Bill reaches the statute book in much its present form, but with some judicious amendments along the lines that I have touched upon, many thousands of people will have secured greater respect for their views, preferences and choices; many thousands of people will enjoy better support in expressing what they want; and many thousands more will gain greater dignity, better treatment and happier lives. No Member of your Lordships' House could ask for more than that.
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