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The Parliamentary Under-Secretary of State for Health (Mr. Liam Byrne): I congratulate the hon. Member for Tiverton and Honiton (Angela Browning) on securing this Adjournment debate. I served with her on the Standing Committee considering the Mental Capacity Bill, and I well remember her contributions to our debates. What she said meant a lot to me, as I had to care for my own mother when she was dying from cancer. She was lucky enough to die at home, surrounded by her family.
The goal at the heart of this debate is securing the best possible care for the dying, and that is of interest to many hon. Members. We need to bring the level of care for everybody up to the standards of the best, because—and it is important to recognise it—in some parts of the country care for the dying is excellent. That is in no small part due to the work of NHS staff and their counterparts in the voluntary sector.
I wish to sketch out some of the progress that we have made in the past few years. I am grateful that the hon. Lady sought to widen the debate beyond those who are terminally ill with cancer to all people at the end of their lives. That said, I want to start with the NHS cancer plan, which was published in 2000. It made important commitments to improve the care of those with terminal cancer. It highlighted the need to ensure that people with cancer get the right professional support, as well as treatments. It included a commitment to develop a supportive and palliative care strategy and to invest an additional £50 million in specialist palliative care for adults. This investment was made to help tackle inequalities in access to services that had been such a problem previously.
The plan led to important progress elsewhere. A good example is the £6 million that was invested over three years in training district nurses in the principles and practice of palliative care. That extremely successful programme has enabled nurses to gain more confidence in assessing what patients and families need if they wish to die at home. More than 10,000 nurses and other health care professionals have now participated in that programme.
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The third area of progress I wish to draw to the attention of the House is the National Institute for Health and Clinical Excellence guidance on supportive and palliative care services—an important document that sets out services that help patients and carers. I was glad to hear the hon. Lady highlight the needs of carers, because they are often overlooked, even in debates in this House. Although oriented towards cancer, many of the principles of the guidance apply equally to conditions other than cancer.
The fourth area of progress is the NHS programme "Building on the Best", which was published in 2003. It set out a plan of action to enable people, regardless of their disease, to make choices about how they die, and to have access to high quality end-of-life care.
Fifthly, we are about to introduce a White Paper on health and social care. We consulted the public and a number of stakeholders. I wish to record my thanks to organisations such as Marie Curie Cancer Care and the British Heart Foundation for the work that they did to help us get the White Paper right. The ambitions of the public were clear and confirmed our direction of travel, which is to strengthen services to increase help to people who choose to die at home. My right hon. Friend the Secretary of State will present that White Paper to the House in the not too distant future.
I wish to add my analysis to that of the hon. Lady, before I highlight the progress that we can make. As she said, the majority of people state that they would prefer to die at home, given the right circumstances and support—an important caveat. However, only about 20 per cent. manage to achieve that, with 4 per cent. dying in hospices, 20 per cent. dying in care homes, and some 56 per cent. still dying in hospital. That must change.
Palliative care provision is heavily weighted towards cancer patients. Some 95 per cent. of all referrals to specialist palliative care services are for people with cancer, but cancer accounts for "only" 25 per cent. of deaths each year. Addressing that inequality in care is an important challenge.
Angela Browning: From where will the Minister draw his definition of palliative care? The World Health Organisation defines palliative care as
However, a diagnostic, disease-based definition means that one needs to identify the disease first. As the Parkinson Society points out, Parkinson's is a disease, but it is not a terminal illness. The issue is like dancing on the head of a pin and I hope that the Minister will look closely at it.
Mr. Byrne: I am grateful to the hon. Lady for that intervention. If I may, I will reflect on that and drop her a line. It is an important point for reflection, particularly as we finalise the White Paper over the weeks to come.
There are a number of other challenges that I want to mention. Many people at the end of their life will be suffering from a number of different conditions, not just one, and that can often create complications. We must not underestimate the role of carers because their availability, their attitude and the support that they provide are extremely important in determining whether
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people are able to die at home. During the listening event that we conducted while we were preparing the White Paper, we paid very close attention to the needs of carers, and we will reflect on what they said to us in the White Paper.
The last point that I would add to the hon. Lady's analysis is that we must not forget the need for good bereavement services. I know myself that they can make all the difference at what is often an extremely difficult time.
Angela Browning: The Minister is very generous in giving way. As I am sure he is aware, sometimes when an elderly relative dies, people make rather euphemistic comments such as, "Oh well, they've had a good innings," when actually the hurt and the bereavement is still very great.
Mr. Byrne: The hon. Lady is absolutely right. The Minister for Local Government, my hon. Friend the Member for Oldham, East and Saddleworth (Mr. Woolas), is soon to present a report from the social exclusion unit about excluded older people. It makes the point that the descent of a number of older people into social exclusion is triggered by the death of a close relative, not just because of the depression that is induced but because of isolation.
What are we going to do about that? The mandatory NHS national service frameworks are extremely important. The older people's NSF sets out very clear standards and service models throughout health and social care; it is vital that those services work together in providing care for those who are dying. The long-term conditions NSF sets out in some detail the quality requirements for NHS treatment of those with neurological conditions.
The reason those frameworks are so good is that they have benefited from the input of a number of organisations involved in providing palliative care: not only Sue Ryder Care, Macmillan Cancer Relief and Marie Curie Cancer Care but the National Council for Palliative Care, to name but a few. The end-of-life care programme is extremely important if we are to realise those ambitions. It is led by the national clinical directors for cancer and for older people and neurological conditions. It is backed by about £12 million of investment, and it is being taken forward by strategic health authorities and primary care trusts. It has a simple objective: to skill up staff for whom end of life is only part of their work load. It provides a number of tools: the gold standards framework, the preferred place of care and the Liverpool care pathway.
The hon. Lady will be interested to know that about 23 per cent. of all GP practices have implemented one or more of those tools; 43 per cent. of hospital trusts have now implemented the Liverpool care pathway in one or more wards; and about 36 per cent. of hospices have implemented one of the tools. We need to make slightly faster progress in care in nursing homes, and there is a programme of work under way to help to achieve that.
There is also more that we can do to strengthen bereavement support. The Government have published advice to support the development of improved local bereavement services. It is called "When a patient dies" and covers the support needed before death both by
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those who are dying and by their families and carers. As the hon. Lady says, there is often a need for a lot of emotional support for the person who is dying, as well as for their family, in order to make the appropriate preparations.
Together with that, the Department has helped to establish the National Association of Bereavement Services for NHS professionals involved in providing bereavement support services. The Department is working very closely with the association to deliver a series of regional workshops for NHS staff based on the guidance.
We shall also make further proposals to support carers in our White Paper on social care and health. As the hon. Lady knows, we have made substantial investment in providing more support for carers over the past few years. Recently, we confirmed that about £185 million would be made available, usually through local authorities, to support the work of carers. From visiting hospices and from people who work with the NHS, I know that respite care in local organisations is often what makes one of the most difficult points in people's lives a little more bearable.
As the hon. Lady knows, we made a manifesto commitment in May to double funding on palliative care, which will be extremely important in helping more people die at home. She is right to say that as part of our policy work we need to create a clear and widely encompassing definition of palliative care services. That will be important in helping to ensure that the implementation of our manifesto commitment is absolutely right.
The hon. Lady teased out an important point: the commitment is applicable to all people at the end of their lives, whatever their age or condition. As she said, the commitment must be diagnosis-neutral, and implementing it regardless of age or condition is extremely important. I think all Members will agree that it reaffirms the Government's dedication to improving the care available at the end of life.
We shall have much more to say about the implementation of the manifesto commitment in the White Paper that the Secretary of State will produce. I thank not only the people who were involved in the consultation, but also some of the carers organisations, such as Carers UK, as well as organisations such as Marie Curie and the British Heart Foundation, which were involved in some of the policy taskforces. The hon. Lady probably knows that Marie Curie's work with us, and that of other organisations, has been extremely important in helping us to understand how some of their learning, such as that generated by Marie Curie's pilots in Lincolnshire, can be more widely disseminated in the rest of the country. When we add their experience to innovations such as the gold standards framework and the Liverpool care pathway, we shall achieve a good understanding of how services should be developed. The key now is action: how to ensure that those services are available to everybody, not just those who are lucky enough to live in the right areas. That will very much be the objective of the White Paper.
In conclusion, I reiterate my thanks to the hon. Lady for giving us the chance to discuss this issue. Enabling people at the end of life to live and die in the place of
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their choice—in other words, the chance to experience a good death—should be the great aim not only for the NHS but for all who work in social care. The issue will be clearly set out in the forthcoming White Paper, as
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part of the Government's agenda. We are committed to ensuring equality of access to high-quality palliative and end-of-life care, regardless of age or condition.
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