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Lord Patel: My Lords, I, too, congratulate my noble friend Lady Finlay of Llandaff for securing this debate. I am pleased that she made it to the Chamber despite the difficulties. I am also grateful to the many organisations and individuals who have provided me with information. Much of my speech draws on their briefs.
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I start with what I think are the key challenges for delivering high quality palliative care. I hope that the noble Lord will agree with me that they are important challenges. However, he will be relieved to hear that not all of them focus on more money as being the only solution.

First among the many challenges is that of delivering palliative care not only to mostly elderly patients suffering from cancer but also to those with chronic and progressive illnesses, to which I shall return. Secondly, there is the challenge of delivering palliative care in multiple care settings. More resource will be necessary, but there also needs to be more effective inter-agency working and better co-ordinated palliative care education, with national quality control, to ensure more effective workforce plans. Another challenge is that of not only recognising the differing needs for the palliative care of children, young people and ethnic minorities, as has already been mentioned, but the need to develop the kind of service structure that delivers it. There is also a need for raising public awareness and expectations of what palliative care can deliver. Often the expectations are not high enough.

Let me expand on some of those challenges. People with chronic disease and progressive illness have the same needs as those suffering from cancer. They have a much diminished quality of life and a shorter lifespan. Such people have an equal right to palliative care, but their needs are not met, as dramatically demonstrated in a television documentary last year, which some of your Lordships may remember.

The noble Lord, Lord MacKenzie of Culkein, has already referred to some people with motor neurone disease being unable to get palliative care. I believe that only 39 per cent of those with the disease are able to get satisfactory care.

Why do I say that palliative care has to be delivered in a multiplicity of settings? The role of acute hospitals is changing and this will lead to a reduction in acute care and the number of beds. Modern approaches to diagnosis, pre-admission and discharge planning will change the way in which care is delivered. The role of care homes and community hospitals will also change. More palliative care in future will have to be delivered in a multiplicity of settings, with clear implications for the training of all health professionals who provide palliative care.

Workforce planning has already been referred to by many noble Lords. I will not expand on it further except to say that just providing additional money will not solve the problem. It requires a little more long-term planning.

There is a need also for more effective inter-agency working. Many impediments to effective palliative care lie at the boundaries between social work, local authorities, hospices et cetera, as well as around partnerships, care philosophy and organisational ethos. There is also the challenge of the better co-ordination of education in palliative care for all health professionals, with a national overview.
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My noble friend Lady Finlay and others have already spoken about the differing needs of children and young people in respect of palliative care. I shall speak briefly about the needs of the ethnic minorities. To die with dignity is one of the most fundamental of all human rights, but notions of what is a good death vary between cultures. In ethnically and religiously diverse Britain, I hope that the need for high-quality care at the end of life for all will be recognised. But before that happens, some fundamental changes will be required, both in the provision of palliative care and the rate of progress in introducing education in trans-cultural medicine to medical and nursing curricula.

Currently, only a tiny percentage of people from ethnic minorities has access to services for the terminally ill. For a variety of reasons, patients from ethnic minorities are often dying at a young age from diseases not related to cancers. There is a false belief among some people that hospices, with their Christian roots, cater only for people from that faith. There is a lack of understanding on the part of health professionals of the death rites of different cultures. For instance, why is it that a middle-aged Muslim daughter insists on maintaining a day-and-night vigil of her dying mother? Or why is it that the Hindu parents of a dying child wish the child to be as close to the floor as possible? The development of palliative care services that cater for all cultures and the training of professionals to understand them are key issues. More than 65 medical schools in the United States of America now offer modules in spirituality and health. These and other good practices in the education of health professionals need to be introduced in the United Kingdom.

These are some of the challenges that need to be addressed. If we accept that palliative care services are not as well developed as they should be, and that they should be developed to deliver care to all who need it to a standard that they deserve, we have an opportunity to shape and develop these services. I hope that the Minister will agree that the starting point could be the palliative care needs assessment report by the research and development department of the Department of Health—a report that is all-encompassing and addresses all of these issues, including the resources required.

3.10 pm

Baroness Rawlings: My Lords, I, too, am grateful to the noble Baroness, Lady Finlay, for securing this important debate and I look forward to the maiden speech of my noble and learned friend Lord Lyell of Markyate.

I am acutely aware that palliative care in this country is under-supported. For every £50 spent in the United Kingdom on research on cancer, less than one penny is spent on end-of-life or palliative care. The United States spends only 0.9 per cent of its cancer research budget on palliative care, but even that low figure is proportionately four times higher than that of the United Kingdom. The result of that under-investment is worrying. There is now reliable evidence
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from studies at King's College, London—here I must declare an interest as Chairman of Council—that well over half those people affected by terminal illness would want to die at home. Sadly, for most, that is not possible. Despite all government efforts, cancer home deaths in the UK are still falling—from 27 per cent in 1994 to 22 per cent in 2001.

Palliative care support for those suffering from illnesses other than cancer is even more stretched. About 5 per cent of patients who benefit from some sort of palliative care service have diseases other than cancer, despite the fact that 75 per cent of people die from conditions other than cancer. Some groups, especially older people and those from ethnic minority communities, are especially vulnerable to missing out on the support of local palliative care services.

Despite that, Britain should be proud of its world-leading position on the development of palliative care. The modern concept of hospice began here with the work of Dame Cicely Saunders and others, as we have heard from several noble Lords. I add my thoughts for her to those of my noble friend Lord Hayhoe. That has now spread to more than 100 countries.

As society ages, the nature of illness changes. So, too, must our understanding and expectation of palliative care. Infectious and congenital diseases are more effectively treated and people live longer. Healthcare is becoming increasingly concerned with chronic disease at the end of life, rather than acute illness. Those trends are well known, but still not enough is being done to identify the best way to relieve many symptoms, such as intractable pain, breathlessness, depression and profound weakness, that affect more than two-thirds of people in the last year of their life.

I am proud to say that, despite the limited investment, significant progress has been made in those areas, not least at King's College, London, where our department of palliative care led by Professor Irene Higginson has been a pioneer in research, teaching and care. However, that work has been held back by a national lack of focus on palliative care. For that reason, we have undertaken to create an institute of palliative care, the first in the world, bringing together like- minded organisations such as the Cicely Saunders Foundation, King's College Hospital, the Wolfson Foundation, the Weston Foundation and Macmillan Cancer Relief, to create the Cicely Saunders Institute.

Unique in the world, that physical institute will be devoted to improving the way that people are cared for, making a decent quality and dignity of life attainable even at the end of life. It is encouraging that we have been able to secure the funds needed for that project purely from private sources.

I speak in this debate on a subject that is not normally mine—although I admit that my first job was as a nurse. I do so to support the noble Baroness, Lady Finlay, in hoping that we can put palliative care higher up the agenda.

We have an obligation to ensure that patients and their families have access to the very best care and support at one of the most frightening times in their lives. I urge the Government to enhance their commitment to palliative
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care by increasing the proportion of the cancer research budget spent on it to at least 10p in every £50 rather than the 1p I mentioned at the beginning of my few words—and correspondingly across other conditions—enabling more people to receive vital support when they most need it.

3.15 pm

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