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12.24 pm
Mr. Oliver Letwin (West Dorset) (Con): I should begin by saying that my brief appearance in the Chamber without a tie was not an expression of extreme Cameroonian modernism, but merely an oversight on my part; I do not have a mirror in my office. I hope that it will be recognised that I am now perfectly attired.
This Bill, brought forward by my hon. Friend the Member for Meriden (Mrs. Spelman), is enormously valuable and I want to speak about three of its elements. I take entirely into account the thoughtful observations of the hon. Member for Southport (Dr. Pugh) about some of the practical issues, but my first point is that there are severe strains in the current palliative care system. I mentioned the case of children’s hospices in my intervention, as did my hon. Friend in her speech; it does not conform to the general pattern for hospices, which receive, as my hon. Friend said, about 30 per cent. of their support from the state. In many instances, very little support from the taxpayer is available to children’s hospices at all.
I have associated in my constituency with two children’s hospices that have had particular problems in recent months. That is due partly to the peculiar circumstances of the Icelandic banking crisis and partly to the decline in giving that has inevitably resulted from the recession. The lack of serious taxpayer funding is a significant problem under such circumstances, and my hon. Friend’s Bill would do much to help address that practical issue. The two children’s hospices that I mentioned serve my constituents, so I have looked into the issue at some length. I am not persuaded that, when all the sums are done, there will be a saving to the taxpayer as a result of the current arrangements. On the contrary, I suspect that the taxpayer would, in a hidden way, meet considerable additional costs if the provision from children’s hospices were to decline as a result of the current problems.
Although she is now at the Department of Health, the Minister has been a distinguished occupant of a Treasury post; what I have mentioned may be a case of immediate Treasury control causing additional fiscal problems at a time when the nation certainly cannot afford such problems. Discussion of the Bill offers fertile ground for combining a prevention of decline in quality of life with, unusually, savings in public expenditure. I hope that the Minister can use her good offices and her past record in the Treasury to try to disentangle all that, and that as a result the Bill ends up benefiting both the taxpayer and those who most need the services.
My second point is wider and more human. Both my hon. Friend the Member for Meriden and the hon. Member for Southport mentioned the phrases “a good death” and “dying well”. What my hon. Friend said
about the importance of the moment of death and the approach to death is enormously welcome. The hon. Gentleman mentioned that our natural attitude to medicine, hospitals and so on is that they are “fix you” places, and that was also welcome. There is a significant and large-scale issue, of which that concern is one part. We have all had the experience of relations and others close to us dying at one time or another. Because of my father’s condition, I also have experience of the incredible ability of our national health service to intervene and sustain life in a way that would have been impossible in previous eras.
However, as a result of those various experiences, I also have, unfortunately, a pretty acute sense that there is a great gulf. On the one side, there is our current concentration on the ability to fix things, even to the extent of restoring life when it would otherwise have disappeared; that is something enormously impressive, to which huge resources are devoted and in which the techniques employed are now staggeringly effective. On the other side, there is the extreme paucity of provision for quality of life once someone has been rescued from near death, or once someone is kept in being for a period leading to their death.
It would be wrong to say that keeping someone alive lacks all value if the quality of life is less; there is a value in life. However, the truth is that if one imagines oneself in the position of the person involved, mere life is not enough. There is an increasing problem of an imbalance between our attention to the question of keeping people alive, and our relative lack of attention to the question of the quality of life they enjoy while alive. At no time is that question more acute than as people approach death. It is therefore enormously welcome that we should focus not only on the Bill’s technical characteristics, but on the points it raises about the need for a reorientation of our concerns away from the invasive and remarkable ways in which we can keep people alive and towards the question of how we can, as a nation, ensure that people have a quality of life, even right to the end, that is in accord with what we would wish for ourselves and for those we love and care for.
The third and final point that I want to make is this. Having quite frequently visited friends, relations and constituents in hospices, and having also, as we all have, seen people approaching the end of their lives in hospitals, I have noticed a remarkable contrast. Of course, the level of care in hospitals is frequently admirable, as is the level of medical attention, but there is something about the way in which the patients feel and are treated in a hospice that is peculiarly suited to this very strange time of life—perhaps, in some ways, the most important time of life, as one approaches the end. There is nothing that I fear, particularly, about being dead, but we all fear the process of coming to death.
I accept the points made by the Liberal Democrat spokesman about the difficulty of the state having a role in spiritual and psychological counselling. Nevertheless, my hon. Friend the Member for Meriden is surely right that there is, as one approaches the end of life, a need for something that goes way beyond what is usually perceived as medical support. It is almost inevitable that hospitals will focus largely on medical activity. That is not a failing of our hospitals; I cannot see what else a hospital would ever do. We demand of our hospitals that they are brilliantly good at fixing people—we hope, at least, that they will be good at doing it—and,
by and large, they are. However, we cannot ask them at the same time to put the amount and quality of effort that a hospice can afford to put into the kind of support that—even if we do not describe it as spiritual, which is perhaps quite a long way down the track—is psychological. A hospice can provide the degree of psychological support that can make an enormous difference to the quality of those last days and weeks of a person’s life. It is a good idea to enable people to transfer from a setting in which it is intrinsically difficult to do that to one in which it is intrinsically easier to do so. That is a large part of the gist of my hon. Friend’s Bill, and I strongly support it.
12.34 pm
Mr. Stephen O’Brien (Eddisbury) (Con): I begin by warmly congratulating my hon. Friend the Member for Meriden (Mrs. Spelman) on selecting this subject for her private Member’s Bill. She made a strong and lucid case for prioritising the needs of patients receiving palliative care. I am sure that the House will agree that her compassion shone through her wonderful speech, which covered the ground comprehensively and cogently, particularly with regard to asserting the right of those undergoing end-of-life care to choose the setting in which they are treated.
I am sure that all hon. Members present, and those who will read our proceedings, will agree with my hon. Friend that each individual deserves to die with dignity, in the place where they feel most at rest and comforted, be it at home, in a hospice or in a hospital. I echo the tributes that other hon. Members paid to the hospice movement, and in particular I pay tribute to St. Luke’s hospice in Winsford in my constituency. It is one of the many hospices around the country working tirelessly to provide a place of refuge for people who are undergoing the ordeal of terminal or life-threatening illnesses and conditions, and for their families, friends and other loved ones. Its cause, and that of every hospice, is close to my heart. Through the work of my wife as a nurse at St. Luke’s I have come to know a great deal about the tremendous commitment and dedication and the special skill, which my right hon. Friend the Member for West Dorset (Mr. Letwin) mentioned, of those who work in hospices and all the ancillary workers. It is a wonderful form of work.
As my right hon. Friend said, we need to bear in mind the fact that there is something extraordinarily special about those who engage themselves with people coming towards the end of life. It is care in all its contexts and meanings. It is care for individuals, their families and communities, and it is available in all settings and geographies and in relation to all illnesses and conditions. There is no greater compass of the word “care” than applies to palliative care and, above all, care as people approach the end of their lives. It ensures that pain control, comfort, confidence and good counsel are available.
The issues raised by the Bill prompt the question of what it means to die well. In fact, the hon. Member for Southport (Dr. Pugh), who spoke for the Liberal Democrats, used the term “a good death”. I dare say that if we track back only a few years, we as politicians would have been extremely chary about using that sort of phrase in the public domain. People recoiled from that slightly. It is a remarkable sign of how much we have come to understand
the issues that surround this important matter that we are able to use a term such as “a good death” to help inform and shape the approach that we as policy makers, and society itself, take towards the extraordinarily important issue of giving people confidence through their lives that there is a process by which they can aim to have a good death and die well.
If we are to have a choice about where we receive care at the end of our lives, the Government, the NHS and social care services must seek to understand the preferred circumstances in which an individual wants his or her life to come to an end. For most of us, dying well would entail spending our final moments free of pain, surrounded by loved ones in an environment of our choosing. As my hon. Friend the Member for Meriden asserted, the majority of us do not wish to die in hospital, yet there are those who would prefer to be cared for there than place the burden of their care on their family and friends.
I am sure that hon. Members agree that legislation must ensure that the fulfilment of patients’ wishes for the end of their lives is not impeded by patchy delivery of palliative care resources and care services. If patients are to be given choice over the location of their palliative care, the palliative care sector must become a priority for the Government. It has remained the NHS’s poorer cousin for perhaps too long. The Government shower the work of palliative care services with praise, and I pay tribute to them for that, yet we are all aware that it has been a problem for the Department of Health and other organs of government to match that expression with the action that is required to put in place the policies and other actions that will ensure that that work is adopted as part of mainstream thinking in care services. It is about not just putting in resources but removing barriers both cultural and active.
The Government’s long-awaited end-of-life care strategy goes some way towards acknowledging that the palliative care agenda must be prioritised in the coming years. I welcome that. Prior to the strategy, however, the Government had, to some degree, sidelined—although that is probably too strong a word in this context—palliative care, dismissing it as a lower priority sector. Indeed, the strategy admits that, describing palliative care’s profile as “relatively low” in the NHS and social services.
Hon. Members will be aware that, despite the strategy, palliative care still lacks its own payment-by-results tariff and relies on charitable donations to provide many of its services to patients. The Treasury, under the reign of the Prime Minister when he was Chancellor of the Exchequer, promised that by April 2006 charities would not subsidise the taxpayer. That pledge was made in the 2002 cross-cutting review of the role of the voluntary and community sector in service delivery. Since 2004, however, Government spending on hospices has actually fallen by 3 per cent. Figures from Help the Hospices show that today only 31 per cent. of hospice expenditure is Government funded, compared with 34 per cent. in 2004.
The Minister of State, Department of Health (Dawn Primarolo) indicated dissent.
Mr. O'Brien: I see the Minister is nodding her head negatively.
Dawn Primarolo: The hon. Gentleman made a point but then gave different evidence. He said that Government investment in hospices had fallen. It has not: it has increased. The hospice movement, including St. Peter’s in Bristol, with which I am very closely connected, has already made it clear to me—and, I am sure, to him—that it wants to be able to maintain its independence, while also seeing a stream of financial support from the Government, and the Government are delivering that.
Mr. O'Brien: I am grateful to the Minister and glad that she took the opportunity to clarify the position. I was quoting the figures from Help the Hospices, as I am sure she is aware, and from the Sue Ryder Care briefing. Her answer might have indicated that there has been an increase in the absolute number, whereas I was focusing on the percentage of expenditure that is Government funded, but perhaps I paused for breath too quickly in the middle of a sentence before I could do so. None the less, the fact that there has been a percentage drop is an important point, even if the Government have clearly put it on the record that there has been an absolute rise.
The National Audit Office has also emphasised the fact that nearly a quarter of PCT contracts with hospices are for one year only. Therefore, not only do the Government have to try to match their rhetoric with results, but we need to be careful that there is no watering down of any commitment to palliative care as each year passes. In order to fulfil the Government’s pledge on palliative care, the Department of Health promised in 2004 to provide a tariff for palliative care by 2008-09. That tariff would ensure that palliative care services outside the NHS had their costs met in full by NHS funding. However, five years on and after that intended deadline, there is no sign of the tariff appearing. I hope that the Government will take the opportunity that this private Member’s Bill provides to set that pledge right, because it is now both needed and desired.
However, it is not the specifics of palliative care funding that I want to focus on today. Rather, I want to highlight how a collaborative approach to care from health and social services can enable palliative care to exceed the bounds of hospitals and hospices and become rooted in the community. I am grateful to the people at St. Luke’s in Winsford for briefing me on how they are trying to move beyond those bounds. The Bill highlights the need for co-operation among NHS bodies, social services and voluntary organisations in the delivery of palliative care. Durable partnerships between those authorities will be instrumental in providing choice for palliative care patients and in opening up more opportunities to be cared for in the home, which is what we need to focus on.
My hon. Friend has frequently drawn our attention to the fact that out of the 75 per cent. of people who die in hospital, 25 per cent. express a wish to die at home. Opinion polls from Marie Curie also suggest that 65 per cent. of the population would like to die at home. The desire for community based end-of-life care is clearly widespread, and if the public’s call for more community care were not evidence enough to convince Ministers of the need for action, the stark demographic fact of our ageing population must surely persuade them.
My right hon. Friend the Member for West Dorset talked about children’s hospices, particularly those in his constituency. There is an important need for
co-operation between social services and health provision in this context. Co-operation between social services and adult health is easier to achieve than similar co-operation with child health provision. Adult social services now come under the remit of the Department of Health, whereas the Department for Children, Schools and Families is responsible for children’s social services. Work must be done to ensure that palliative care in the home is an option for children as well as for adults. The Government must ensure that the departmental divisions in responsibility for health and social care do not impede the co-operation between the services. The NHS and social services should investigate ways of working together to identify children in need of home care, and to deliver that care when it is requested and appropriate. I hope that the Government will take the opportunity, either today or shortly, to give us some clarification and hope on that matter.
Turning back to the demographic changes and challenges that we face, the annual United Kingdom death rate is set to rise from 503,000 in 2006 to 586,000 in 2030—an increase of 17 per cent. It is an indisputable fact that demand for palliative care will increase. If health and social care services are to stand a chance of meeting that demand, palliative care services will have no choice but to filter out of hospitals and hospices and to permeate homes and communities. The terms of the Bill raise certain questions. What measures are the Government taking to plan for the emerging needs of our ageing population in regard to palliative care? When will they act? How will they ensure that a patient’s wish to be cared for at home can be honoured?
In recent years, I have investigated and championed the treatment of dementia in the NHS and beyond, and I am pleased to see that my hon. Friend the Member for Rugby and Kenilworth (Jeremy Wright) is with us today. He is the chairman of the all-party parliamentary group on dementia, and has done a tremendous amount of work to raise the profile and understanding of this great demand facing society. Dementia has no known cure, and palliative care comes heavily into play in this context. Figures suggest that a large proportion of the elderly do not access specialist services, and that palliative care is confined largely to those suffering from cancer. Indeed, 95 per cent. of palliative care patients suffer from a cancerous disease, while elderly people with conditions other than cancer account for but a small fraction of service users.
The number of elderly people receiving palliative care would surely increase if services were made more widely available in the community and in the home. Dementia sufferers are rarely treated in hospital for long periods, and their care is often undertaken by relatives and friends. Bringing palliative care to the doorstep of the patient, whether in a care home or a private home, would benefit the patient and greatly aid the relatives and friends devoted to their care. I hope that the Minister will tell us what measures the Government will put in place to ensure that those who are not in a mental position to make an informed choice about their palliative care will not be discriminated against. The hon. Member for Southport touched on that point earlier. I also call on the Government to promote palliative care options to patients diagnosed with dementia, so that palliative care services can become more widely available and are not limited to cancer patients. That underpins the argument put by my hon. Friend the Member for Meriden.
My hon. Friend was right to say that thought must be given to the work force requirements needed to accommodate this approach. She drew our attention to the limited scale of the palliative care work force, which comprises just over 5,000 nurses and 200 doctors nationwide. We need to recognise that these are very specialist professionals; they are trained doctors, nurses, therapists and auxiliaries.
It is important not to confuse this work force with those mentioned in this week’s Budget, and the major demand for more people to work in social care generally. Here, we are talking about the specialist qualities and training required to give people palliative care and help them and their families through the process as they move towards the end of life. If the NHS is to offer more choice to patients, the skills to help deliver such care must infiltrate the wider care professions and disciplines. These professionals, along with social workers, will also be key to identifying the individuals in need of palliative care. A closer relationship between the NHS and social services with regard to the palliative care strategy could enable the services to identify individuals who could benefit from palliative care and ascertain their preferred care setting so that services can be commissioned accordingly.
The Government recognise in their end-of-life strategy the desire among patients for a choice of settings in which to receive palliative care, so I hope that they will use this Bill, promoted by my hon. Friend the Member for Meriden, as a vehicle to enable the NHS and social care work forces to be upskilled in order to offer choice across the country. Palliative care should not be sidelined into its own sector or specialism. If access and availability are to increase, it must enter the mainstream of NHS treatments. We offer significant medical and emotional support whenever life begins, so we now need to give careful thought to why we do not attend to the end of life with the same sense of reverence and expertise.
As the Bill asserts, the definition of palliative care constitutes much more than just the supply of medical treatment. The term includes the provision of psychological, social and spiritual health and support. Some patients who value such support may well feel that it is best delivered outside the hospital. Individuals and families who have made use of hospice services often comment on the enhanced pastoral support they are able to receive once they leave the busyness of the hospital setting and can gain the time and space for reflection and rest.
If patients are to be given the option of receiving care at home and if hospice services are to be extended to be part of the community and delivered in homes, neither their pastoral support nor medical treatment should suffer neglect. Home care must not be allowed to become a guise for inaction or cost cutting, whether on the part of the Government or of any other public service organisation. Although delivering palliative care in the home will inevitably take some pressure off hospital beds and staff—a benefit highlighted in the end-of-life care strategy itself—this outcome should be a by-product of a service that is driven by the needs of the patient.
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