Only a few days to go: We’re raising £25,000 to keep TheyWorkForYou running and make sure people across the UK can hold their elected representatives to account.Donate to our crowdfunder
rose to call attention to the availability of palliative care; and to move for Papers.
My Lords, on this sad day I would like to begin by paying tribute to the rail company that brought me here, First Great Western. I have seen at first hand how it coped as today's events unfolded. I pay tribute specifically to the staff of St Mary's Hospital in Paddington. I have heard how brilliantly they have coped today.
I welcome, and look forward to, the speech of the noble and learned Lord, Lord Lyell of Markyate, which we shall hear later.
It is an honour to open the debate on this important subject and I declare all my interests in all aspects of palliative care. Britain has led and continues to lead the world in the provision of palliative care, but, sadly, specialist services are inequitably distributed, and this may worsen. Training in the basics for the vast majority of doctors and nurses is grossly inadequate, and the lack of integration of social care with healthcare is denying people dignity.
We will all die, more than half of us with a terminal phase to illness. We want to be cared for adequately in a way that gives us real choices about place of care, what we want done and what we do not want, sensitive to those cultural and religious needs that so many people have, safe in the knowledge that we will have good symptom control to allow us to complete our last tasks of life with dignity, and that those we love will be supported in grieving.
Palliative care is not just about dying. Indeed, when someone is actually dying the opportunity really to make a huge difference has often been missed. It is an essential approach to care from the time of diagnosis, as so often when cancer or other disease is diagnosed it is non-curable and the most that active anti-disease treatments can do is to postpone death by weeks or months. It is only by integrated care that the symptoms of advanced cancer can be tamed: more than 80 per cent of patients with cancer experience pain, and more than two-thirds of those with advanced non-malignant disease also have pain problems. Almost half of patients nearing death are breathless, and half of cancer patients and a quarter of non-cancer patients have nausea and vomiting. Depression hits two-fifths of patients.
Palliative care is not geriatric care. In my own Marie Curie hospice, the average age of patients is 72 years old. Patients should be assured that they can plan to meet their goals in the unpredictable time left and should know that the service will support them. Indeed, unpredictability abounds because it is notoriously difficult to prognosticate with any accuracy. I have helped to arrange weddings in those last days or weeks of life, sometimes within hours: one young woman had her five children as bridesmaids for her wedding in the hospice. A father baptised his son as his final gift. Parents leave memory boxes for their children with letters to be opened on key birthdays, and other people describe a peace of mind that comes from being assured of attention to their needs. Unexpected time becomes precious: one man whose wife lived six extra weeks after an intervention said:
"Six weeks might seem like no time to you, but to us it was lifetime. We did so much talking and I am now a different man, able to bring up the children, thanks to those six weeks".
The World Health Organisation defines palliative care as,
"the total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families".
Britain has led the rest of the world in the care of those facing death. We have educated doctors, nurses and other healthcare professionals from around the globe. Pioneers such as Dame Cicely Saunders have been visionary role models in many countries. We know how to control pain, even difficult neuropathic pains, control other symptoms, such as breathlessness and sickness, and avoid constipation and pressure sores. Crucially, we have proven that you can enhance independent quality of life, despite life ebbing away.
It has been estimated in Canada that, on average, five people are deeply affected by each person's death and another 25 are also affected. So make no mistake: bad care does not die with the patient. It lives on in the memories of at least five, and possibly 30, people, altering their view of the future that they want for themselves.
The House of Commons Health Select Committee report identified gross deficiencies in the provision of palliative care in the UK. The National Audit Office's report also makes salutary reading. It catalogues half of hospital patients experiencing moderate to severe pain, with over a quarter of those feeling that hospital staff did not do all they could to try to relieve it. One in three cancer patients felt so anxious and/or depressed that they needed help to cope, but one fifth of those reported that hospital staff did not do all they could.
The Government must be congratulated because they have certainly recognised and fostered palliative care, as demonstrated by their provision of an additional £50 million per annum for specialist palliative care since 2003–04. In 2003–04, that £50 million was allocated to the 34 cancer networks whose palliative care plans were monitored centrally. In 2004–05, it was allocated to the primary care trust baselines. It is ring-fenced until 2006–07, but then it enters the general pot. Will it continue to iron out inequities? I fear that it will be swallowed up in the financial deficits that PCTs face, and will not help iron out some of those inequities in provision. In their manifesto, this Government notably and importantly committed to:
"double the investment going into palliative care services, giving more people the choice to be treated at home".
So how is this going to happen? How is this investment going to be made?
In 1995 the Calman Hine report recommended a core multi-professional team to be integrated with cancer care. Why is that not ubiquitous? In Cardiff's Velindre Cancer Centre, where I work, there is a ward for the sickest patients in the hospital, where all the patients are automatically under palliative care as well as oncology. The oncologist steers the anticancer treatments and, secondarily, we attend to other domains of their needs. But that model is almost unique. Only 228 hospitals have palliative care support teams, or support nurses, to ensure that palliative care advice and input is readily available on the wards. Even in those hospitals, the staff will tell you that care sadly varies widely from one ward to another.
However, gross inequities in provision abound on a wider scale. The needs assessment developed by Peter Tebbit within the National Council for Palliative Care has shown wide variations in provision. Wide variations exist in palliative care resource needs per head of population because mortality rates and social depravation vary. For example, the Northern Cancer Network needs 60 per cent more service provision than Thames Valley—but it does not have it. Some PCTs provide a service twice as extensive as their neighbouring PCT despite similar patterns of need. Historically, hospice developments were ad hoc—often, driven by strong and highly motivated personalities. But those days must be over, as we try to plug the gaps.
Some organisational issues aggravate the gaps in provision. Out-of-hours cover is patchy and the changes in primary care provision out-of-hours have aggravated those gaps. Perhaps nine-to-five weekday working for specialist palliative care nurses is over, as the need for services, particularly out-of-hours, remains unmet. No amount of cold education will ever alter this. Such provision, out-of-hours, needs to be built into contracts in the future because crises arrive at nights, at weekends or at bank holidays. These times tax patients and their carers to the limits.
Over half of all cancer deaths, and those from other causes occur, in hospital. Yet people so often state that they want to spend their last days at home. Marie Cure Nurses aim to help this, caring for half of all cancer patients dying at home. They remain with a family when things are difficult, but in the last year the contracting from PCTs for this service has fallen in real terms, as there has been no uplift to account for the nurses' pay award. Only 25 per cent are at home when they die, although 64 per cent of the population expresses a wish to die at home.
Yet inequities also occur by age and sometimes by ethnic or cultural group. A Help the Aged report identified the needs of older people who are dying, and that they are often ignored. They are, in the words of their report:
"more likely than younger people to experience multiple medical conditions, repeated hospital admissions, lack of preventative planning, under-recognition of symptoms and physical or mental impairment. They are more likely to experience social isolation and economic hardship."
"they are less likely than younger people to receive support at home, in hospital or in a hospice, or to receive attention from GPs or district nurses during the last year of their lives. Older people are often described as the 'disadvantaged dying'."
Lack of social care hits the elderly hard. No matter how many healthcare professionals visit, your dignity is undermined if the food in the fridge is going off, if your hair is unkempt, your nails uncut and your underwear unwashed because social care is not there. Yet the young are also hit by such failures. Those with motor neurone disease cannot wait weeks for equipment or adaptations to the home. As one patient so eloquently stated, "By the time the changes are done, the disease has raced ahead, and it's too late!"
Equipment fails to arrive on time, but then it often remains uncollected after a patient dies, depriving others and providing painful memories to the bereaved of disability that detracts from memories of the essence of the person they loved. One patient's wheelchair—and I know about this first-hand—was lost by the service, just when his wife was herself dying in hospital. That cannot be acceptable. Some parts of England have efficient, rapidly responsive services. Why not everywhere?
I turn to paediatric services. There is an acute shortage of paediatric palliative care medicine consultants in this country, yet many children are dying with predictable end points as well.
Equipment, arranging social care and sorting out continuity of care eligibility often delays the discharge from hospital to home, so a unique window of opportunity can be missed. Time is not kind to these patients. They cannot wait in a queue behind planned discharges from the hospital sector.
So, we have inequities by postcode, by place of care, and even down to differences on different wards within the same hospital; by age and by disease group. Over 95 per cent of patients admitted to a hospice have cancer. Many neurology and cardio-respiratory services have not pushed for specialist palliative care availability in the same way as cancer services have, so those patients with non-cancer diagnoses are left to suffer unnecessarily.
Are there solutions and is there a way forward? I urge the Government to work in partnership with the voluntary organisations such as Marie Curie Cancer Care to develop the answers that are so sorely needed. More resources are definitely required. The national tariff on the pricing of services may help, provided that it is sensitive enough to ensure that the needs of some patients for longer in-patient stays are recognised without creating a perverse incentive that fails to get home fast those who wish to go. However, it is fair to say that it has been estimated that at the moment, the charitable sector is providing the equivalent of £100 million-worth of baseline care which would otherwise fall to the NHS. I also make a plea to the Minister that the Community Care (Delayed Discharges etc.) Bill should be revised so that those in hospice beds would now be included.
If staff are trained routinely to ask patients about their pain, they are told, but those patients who are not asked about it will simply suffer in silence. The pain score should become a routine observation in the same way as the temperature and pulse rate. Sadly, Shipman has done untold damage to pain control. Some GPs now report feeling fearful of prescribing adequate doses of analgesics as there is a perception that the GMC is just waiting for another Shipman case. But all the evidence shows clearly that you do not shorten life by correctly titrating up morphine and other drugs to achieve pain and symptom relief. But the educational push needs to continue and the rumours that somehow you can kill patients with good symptom control must be stopped. You do not.
The National Institute for Clinical Excellence has produced palliative care guidance. Professor Mike Richards has driven forwards the Government's End-of- Life care initiative, with the Gold Standards Framework covering communication, co-ordination, control of symptoms, continuity of out-of-hours care, continued learning, carer support and care in the dying phase. And in that dying phase, during the last 48 hours of life, the Liverpool Care Pathway has been shown to make enormous improvements to care in a cost-effective manner. So how can we ensure that this is available to all?
I was not a fan of targets, but I eat humble pie. They have achieved changes. After years of encouraging more education in the basics of generic palliative care, is it not time to ensure that core general palliative care training is part of revalidation so that every service will have staff with up-to-date knowledge and attitudes? We know what to do, but we are not doing it for all those who could benefit. Do we need legislation to ensure that those who need good end-of-life care can always access it? I beg to move for Papers.
My Lords, we are most grateful to the noble Baroness, Lady Finlay of Llandaff, for introducing this timely debate on the availability of palliative care. I declare an interest in that I am associated with the All-Party Parliamentary Group on Motor Neurone Disease, and I am grateful to the Motor Neurone Disease Association and to all other interests for their briefings on this debate. I shall concentrate on palliative care as it affects motor neurone disease, but I am sure that much of what I say will have a more general application.
As a registered general nurse, I knew a little bit about motor neurone disease, but like, I suspect, all too many health professionals, I did not know very much. The full impact of this truly dreadful disease hit me in no uncertain terms when a very close friend and former colleague was diagnosed with it about four years ago, some two years after his symptoms first appeared. Sadly, he passed away some three weeks ago. If it is possible to get a half decent roll of the dice, given the awfulness of motor neurone disease, then my friend was perhaps fortunate on two counts. First, the bulbar symptoms, so often found, were almost entirely absent—the speech, swallowing and respiration were unaffected—although he was otherwise completely paralysed for a very long time.
Secondly, from the time of diagnosis my friend had tremendous support from all of the agencies, whether National Health Service, social services or the voluntary and charitable sector, as well as of course from his family. So I want to take this opportunity to pay tribute to all those agencies, including the Sutton and Merton multidisciplinary motor neurone disease team. I want to make special mention of St Raphael's Hospice, a small hospice in Cheam in Surrey, for its support for the day care centre for the regular and sometimes emergency admissions for respite, and for its care and devotion in my friend's final few weeks. It was significant that he always felt safe at St Raphael's Hospice. As a nurse, I know good care when I see it and all the staff at this hospice deserve the highest praise.
Much depends, if I may continue the metaphor, on the roll of the dice. In many parts of the country palliative care, such as I have just described, is not available. Many palliative care units do not provide day care or respite care for people with motor neurone disease. I understand that more hospices admit people with this disease in the terminal stages, but the number doing so is still less than 50 per cent. No doubt that is in part due to the higher proportion of staff time required to care for motor neurone disease patients and partly due to the fact that most NHS and voluntary sector palliative care units are geared to malignancies.
Given the origins of the hospice movement and the much higher incidence of malignancies, I can understand why that situation has developed. Can the Minister say anything this afternoon on whether there is any realistic prospect of work being done to ensure that access to palliative care, whether for respite or terminal care, is on the basis of clinical need and not of disease type?
It follows that, if hospices are to develop services on the basis of clinical need, there is a cost. Funding is a huge issue, not least for the charitable sector. As noble Lords will be aware, the National Health Service contribution to charity-run hospices fell by some 6 per cent between 1996 and 2002 to a figure of 29 per cent—something I have never been able to understand or rationalise.
That funding has now increased to an average of 34 per cent as a result of the extra moneys made available through the NHS cancer plan. That is welcome, albeit it is still less than the 1996 average. Of course, it is not enough. Again, the emphasis appears to be on cancers rather than on overall clinical need.
I, too, was delighted at my party's manifesto pledge at the recent general election about the intention to double expenditure for palliative care. It would be helpful if the Minister could tell the House how much is presently spent on palliative care and whether the Government intend to double that figure in the lifetime of the present Parliament, or is it intended to gear additional expenditure in the timeframes in the National Health Service framework on long-term conditions?
While I welcome the new National Health Service framework and the fact that most of the 10 quality requirements there is reference to special needs for people's rapidly progressing conditions, my fear is—and I hope the Minister can tell me that it is misplaced—that so much of the NHS appears to be aspirational and that local bodies set their own pace for change. Even the review process appears to be permissive. The document at page 8 says:
"The Healthcare Commission and the Commission for Social Care Inspection may undertake schematic reviews of progress".
That is such an important area that I am sure the whole House would want to know that the commissions will plan joint reviews in this area in the not too distant future.
I accept that change for the better takes time, takes new funding and takes the necessary commitment, but the 10-year timeframe for implementation of the National Health Service framework is a timeframe much too far for persons with motor neurone disease. I again hope that the Minister can say emphasis might be given to an urgent plugging of the gaps in service provision for people with such rapidly progressing conditions.
I dread to contemplate the problems faced by people with these rapidly progressing neurological conditions, as well as for their families and informal carers where there is no access to a specialist team, where palliative care units do not provide for them for respite or terminal care and where healthcare professionals and local services are not geared to deal with motor neurone disease. I have said before in your Lordships' House and I will say it again—it is hardly an acceptable situation in a developed country.
I understand that motor neurone disease kills more people in the UK than HIV/AIDS, but it does not register on the national consciousness in the same way, or indeed in any way at all. Moneys for research, education and care are minuscule by comparison. So much relies on the Motor Neurone Disease Association, which does a remarkable job.
I conclude by referring again to the work of St Raphael's Hospice. As with all charitable hospices, it relieves a substantial part of the burden on the National Health Service. St Raphael's provides education and training for GPs and district nurses to ensure seamless provision of care and generally provide a partnership in palliative care with their NHS colleagues. That includes work on motor neurone disease. Dr Marie Joseph, the medical director and consultant in palliative medicine at St Raphael's and the staff there take great pride in striving for clinical excellence. However, like other hospices, they need more money from government and NHS sources if they are to maintain that good work safely, never mind extend the provision.
The voluntary role is vitally important, but so too is the role of the state in providing an increase and equality of funding, as well as equality of access to all those who require palliative care irrespective of disease type. I look forward to hearing the contributions of other noble Lords in the debate, especially the maiden speech of the noble and learned Lord, Lord Lyell of Markyate. I again express my thanks to the noble Baroness, Lady Finlay of Llandaff, for securing this important debate.
My Lords, I apologise for interrupting the debate but, as your Lordships know, my noble and learned friend Lord Lyell of Markyate was due to make his maiden speech at this point. He is on his way here on foot from some distance. We cannot find out exactly how far away he is because the mobile phone is not working either because of the problems. I hope that he will arrive before long and, perhaps with the indulgence of your Lordships, might speak a little later in the debate than had been intended. I am afraid that we will have to work that out when we get there.
My Lords, I, too, congratulate the noble Baroness, Lady Finlay, on securing the debate on this important subject. In Swindon, where I live, I first chaired a private hospital, then the Swindon Health Authority, and then the Swindon Acute Care Trust. Never once in all the countless meetings that I attended over 13 years did I ever hear palliative care mentioned, let alone discussed. It was generally known that there was hospice provision in Swindon, but it was assumed that that was the responsibility of the voluntary sector. Admittedly that was some years ago, but it demonstrates how neglected by the NHS this critical area of service provision was, at least in our area, and I suspect in other areas as well. Even today, palliative care often tends to be a relatively neglected area in the NHS.
Curiously, I owe my present knowledge of the outstanding work of the palliative care profession, in which I include the hospice movement, to my involvement with the Assisted Dying for the Terminally Ill Bill. In that regard, I should add that I am firmly in the camp of Professor Sir Graeme Catto, the chair of the General Medical Council. When he gave evidence to the Select Committee on that Bill, he saw no conflict between palliative care and physician-assisted dying.
It also became clear from the evidence given to the Select Committee that palliative care is the solution for the overwhelming majority of terminally ill patients, although there are a relatively small but significant number of terminally ill patients who have strong personalities and a history of being in control of their lives, for whom palliative care is not the answer.
As has been stated many times, the United Kingdom rightly has the reputation of being a world leader in palliative care. There can be no doubt that in the centres of excellence, the skills and experience of our palliative care practitioners are outstanding. However, as has already been mentioned, to jump to the conclusion that because of that all is well in palliative care would be inaccurate. Provision of palliative care throughout England is uneven, and research has shown that of the 535,000 people who died in England in 2003 the majority had no access to specialist palliative care and little choice over their place of death.
Ninety-five per cent of admissions to hospice and specialist care in-patient units are for patients suffering from cancer, yet each year about 300,000 patients with life-threatening conditions other than cancer would benefit from palliative care but unfortunately are excluded from it, principally by reason of their diagnosis. As a result, many die a painful and undignified death, and some a terrible death.
The key issue leading to the current unsatisfactory situation is surely one of resource, both for provision of palliative care services and training and development. Bearing in mind that the NHS annual budget is in the order of £69 billion, it is surely unacceptable that, according to an estimate by Marie Curie Cancer Care, to which I am indebted for its briefing, of the £450 million spent annually on hospice and specialist care services in England, only 35 per cent is contributed by the NHS.
The question that arises is: why is there this lack of resource? After all, Sir Nigel Crisp, the chief executive of the NHS in 2003, stated that,
"better care for the dying should become a touchstone for success in the modern NHS", and Labour's recent election manifesto included a commitment to double its investment into palliative care services. It is clear, therefore, that the Government recognise the importance of palliative care, but the question arises as to what they are doing about it. They have announced the introduction of a £12 million investment over three years, and a further £50 million for three years ring-fenced for developing palliative care services. However, in the context of the total expenditure by the NHS and the need for universal high quality palliative care for the 550,000 people who die each year, these additional amounts, adding up to £162 million over three years, are derisory.
In the Select Committee on the Assisted Dying for the Terminally Ill Bill, Professor Richards, the highly regarded national cancer director at the Department of Health, was asked by the noble Baroness, Lady Finlay, how long it was going to take to have equity and access to specialist palliative care for all terminally ill patients. His response was:
"Although I think it is extremely welcome that the speciality is going to be growing over the next 10 years, and probably doubling in size, even then . . . I do not think that is possible. So I cannot give you a figure for when that will be the case".
Professor Richards was saying that he was unable to predict when quality palliative care services would be universally available throughout England. He appeared to be suggesting that 10 years may not be sufficient time, and that it might even be a lot longer. I suggest that this is unacceptable.
It follows that unless the Government take urgent and determined action, fully resourced, we will have to resign ourselves to a situation where, for the next 10 years at least, and probably for a great deal longer, many terminally ill patients will continue to have unacceptable deaths because appropriate palliative care is not available.
From the inquiries I have made, the NHS does not even seem to have completed an assessment of need for universal quality palliative care services, so it is unable to quantify what the need is and what resources are required. This is clearly the essential first step that needs to be taken with a sense of urgency, which is not evident at the moment. The statistics that are available seem to relate largely to hospice care, and it is important to recognise that such care is only a part of palliative care. A needs assessment should include all the services required by the 535,000 who die each year.
Bearing in mind the current vast deficit in palliative care services, there needs to be a large and urgent injection of additional resources into the palliative care sector to increase its availability to all—and, in some cases, its quality. Large sums are also necessary for training and development of doctors, nurses and other palliative care professionals. Consideration should be given to making such training mandatory for all practitioners, and should possibly be taken into account when developing the accreditation requirements of doctors and nurses.
In conclusion, I ask the Minister what the Government's current plans are to address the unmet need and by when they aim for the NHS to provide universal, quality palliative care services?
My Lords, the House will have observed that my noble and learned friend Lord Lyell of Markyate is now here, but he has indicated to me that before addressing the House he wishes to pause and recover from his fortitude in getting here. I welcome him, and congratulate him on that fortitude, and, indeed, the noble Baroness, Lady Finlay of Llandaff, who I suspect also had some difficulty in getting here. At one point, when I got here, I was informed that the noble Countess, Lady Mar, was going to speak in the noble Baroness's place. I congratulate her both on her fortitude and on getting this very important debate.
I have a couple of interests to declare, most obviously as chair of Help the Hospices, to which I shall refer on one or two occasions during the course of this speech. I am also the former chair of East Anglia's Children's Hospices, something upon which this debate has not focused so far. There are particular points about children's hospices, which I do not intend to rehearse today, but I hope that we will not forget their importance in the course of our discussions.
My interest in this matter goes back quite a long way, long before I was chair of either of these bodies, to when I was a junior social security Minister in the early 1980s. My path crossed—probably the tactful way to put it—those of both Anne, Duchess of Norfolk, the founder of Help the Hospices, and Dame Cicely Saunders, who could almost be seen as the modern founder of the movement. As a result of the experiences I had and, frankly, the lobbying I experienced, I spent some time manoeuvring within a particular part of the social security system to direct more money to the support of hospice care. My track record is therefore a bit longer than I might have indicated.
Help the Hospices has funded and supported hospice education for a long while. In the past five years, however, it has greatly expanded the support it offers to information services, in grant aid, in raising funds for local hospices, and in giving voice to the views of the more than 180 local charities which provide the majority of hospice care in the UK, as has been made clear in some of the earlier speeches.
Our ability to grow in this dynamic way has been greatly facilitated over the past few years by the active fundraising support of Lloyds TSB, Halifax Bank of Scotland, Tesco and the Flora London Marathon. I say this to the Minister because I think it is a good indication, both direct and indirect, of the level of public interest and support in this area. Organisations of those kinds give their support largely on the basis of what they think their staff would like them to do, and the interests that their staff have. That has not only been a help to us, but is a clear sign of the public support for the movement and the aims of palliative care.
I do not have any difficultly in expressing support for the Government's agendas on extending the availability of palliative care to people with illnesses other than cancer—I warmly endorse the speech of the noble Lord, Lord MacKenzie, in that particular respect—and in enabling people to die at home if that is their choice. Some of the research, however, suggests that something like a quarter of people would actually prefer to die in a hospice. I hope we shall bear that in mind, too.
The Government's focus on those matters is very welcome but the role of hospices in progressing those agendas should be considered more than sometimes seems to have been done. For example, if we are not to discriminate on grounds of disease, we must understand not only the general palliative care needs of people with other illnesses but also how far they could benefit from hospice care, whether in its current form or a modified form. Help the Hospices is currently supporting a number of pilot projects in local hospices aiming to extend services beyond cancer. Those will be evaluated, and we will be keen to share the results with the department.
There is perhaps a failure to appreciate that beyond the traditional image of hospices as "in-patient units", to use a not entirely appropriate phrase, a much greater range of services is now provided, some of which now enable people to die at home if that is their preference. That care is provided through services such as hospice at home programmes, advisory home care and respite care provided in day centres and in-patient units. We all wish to see those services continue to grow.
Further to some noble Lords' earlier remarks, I should like to test the Minister on the following point. Given the role of hospices in taking forward the Government's agendas, it seems important that government should work closely with the hospice movement in its various forms in taking forward work on end-of-life care. As I sense the noble Baroness, Lady Finlay, felt in referring to partnerships, I believe that there would be merit in the Minister or his colleagues being willing to meet representatives of the hospice movement specifically to discuss how hospices can help to further the end-of- life-care agenda. We at Help the Hospices are certainly very keen to do that.
I can hardly end without making some reference to funding, which inevitably has been a recurrent theme today. Many figures have been given, including those showing the decline that appears to have taken place in the proportion of NHS contribution to adult hospices run by local charities between 1996–97 and 2001–02, and also those on what must be acknowledged was a fairly significant recovery following the extra money made available through the NHS Cancer Plan. There has also been much reference to the promise made in the last Labour manifesto, which we all welcome. However, we have a little difficulty with it because, as the noble Lord, Lord MacKenzie, said, none of us is sure precisely how much is being spent on palliative care at the moment—there appears not to be an official estimate—so it is difficult to know what is meant by doubling the expenditure. It might help if the Minister could shed light on that.
Crucially, in the light of the Government's undoubted commitment to increased expenditure, we need some assurances that the funding will get through. Local hospices are certainly concerned about whether it will be the priority that it must be for primary care trusts if the money is to find its way to what we would regard as the right places. I hope that the Minister can confirm that the costs of implementing payment by results for specialist palliative care will be a first call on the additional funds promised in the recent Labour manifesto.
I conclude by saying that the concern about funding is familiar to anyone who has done a ministerial job of the kind that I have done and the Minister is doing. But there is a danger that, if we cannot translate warm words into cash reaching the ground, we shall not make the progress that will be universally supported in the House and there is a risk at least that we shall find ourselves going backwards. I hope that the Minister can be both positive and—dare I say?—pretty specific.
My Lords, it appears that the noble Baroness, Lady Murphy, is not with us; I had not realised that. She, too, may be struggling to get here. I am most grateful to the noble Baroness, Lady Finlay, for raising the matter, in which I have previously had particular involvement—although not in recent times. I am also delighted that my old colleague, my noble and learned friend Lord Lyell, has managed to get here, and look forward to hearing him speak. I gather that he will probably speak after my noble friend Lady Rawlings. We are not doing too badly, bearing in mind the absolute horrors of public transport in London today.
I should declare an interest. I was president of Help the Hospices from 1992 to 1998. Among the many dedicated, devoted and caring people whom one met in the hospice movement at that time, two stand out with enormous prominence and clarity. The first was, of course, Dame Cicely Saunders, who has been referred to before. She was a quite remarkable lady who founded the first modern research and teaching hospice in 1967. I understand that at present she is not very well. Therefore, it would not be inappropriate for a message to go forth from this debate, from all sides of the House, wishing her well and thanking her most warmly for the marvellous work that she has done over the years.
Looking at some of her articles, I came across a definition of palliative care which she and a small group produced some years ago. She said,
"Palliative care starts from the understanding that each human being is a person, a single bodily and spiritual whole, and that the proper response to a person is respect. Respect means being so open to each man, woman and child, not as simply an isolated individual, but as someone with a story and a culture, with beliefs and relationships, that we give them the value that is uniquely theirs".
I know some not well informed people often think of the hospice movement as being basically a Christian movement. Of course, it is not in any sense. One should remember that Muslims, Buddhists, humanists are all embraced within the work of hospices.
The other person is someone referred to by my noble friend Lord Newton, Anne, Duchess of Norfolk, who, as he said, founded Help the Hospices in 1984. She is coming up to an anniversary. I would not say she is coming of age—in my day one came of age at 21, but now it is rather earlier—but it is an important anniversary. She is a very remarkable person. She brings her unique personality to fund raising. She does not to bully, but she cajoles and persuades all kinds of people to support the work of Help the Hospices for which we are all the better.
Both of those wonderful women have encouraged many others in what they are doing. We have to remember that hospices, although an important part of palliative care, are not the whole of it by any means. I certainly do not have the expertise to talk of the other aspects of palliative care. The briefing that I have received shows the shortage of hospice provision is a result of continual under-funding through the sector as a whole. The representatives of the Marie Curie Cancer Care and Help the Hospices in their briefing have both underlined that fact. Of course, there has been a very widespread welcome to the pledge in the Labour Party manifesto of the doubling of the investment over the coming years. The difficulty is that it does not say what the investment to be doubled is and it does not say for how many years it will be doubled. Therefore, I echo very strongly what my noble friend Lord Newton said to the Minister. Can he spell it out in greater detail? I confess that 30 years ago I had a hand in drafting the manifesto for my party and I know that the words are chosen with infinite care to create impressions, though not necessarily clear pledges. I therefore very much hope that the Minister, whom we all respect for his support and knowledge in these areas, may be able to help us, if not today, at least in the future by producing a paper that would go some way to ensuring that the expectations held for greater support in the whole area of palliative care are not disappointed.
I want to refer to two other matters. The first of them, which was also mentioned by my noble friend Lord Newton, is children's hospices. One has opened in my old parliamentary constituency and I have noticed that it does not quite make clear the area that it serves. It appears to serve more than one primary care trust and not to get very much from any of them. I wonder whether the Minister can elaborate on why children's hospices generally get roughly 5 per cent of their costs through official funding, whereas the figure for adult hospices is over 30 per cent.
Secondly, I refer to training. Recommendation 18 of the House of Commons Select Committee on Health made the very important point that there should be more training for all staff involved in and associated with palliative care. Of course, that is a matter for the royal colleges and the GMC. However, as was said in their response to that Select Committee's report, the Government are encouraging those bodies to do better, and I should be grateful to hear what exactly is to happen in that regard.
I conclude by sincerely acknowledging the very considerable help that the Government have given in the field of palliative care. As a Minister once responsible for such matters, I can say that, as ever, one always wants more and that more is really needed. I therefore hope that this debate will go some way to encouraging the Government to provide that extra help.
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.
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.
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.
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 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 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.
My Lords, I start with a sincere apology to your Lordships for not being in my place at the beginning of the debate; I was walking across London. I was very sorry to miss the speeches of the noble Baroness, Lady Finlay of Llandaff, whom I congratulate most warmly on introducing the debate, and the noble Lord, Lord MacKenzie. None the less, it is a great honour to be a Member of your Lordships' House and I am delighted to have the opportunity to make my maiden speech on the very important subject of palliative care.
Like many Members of your Lordships' House, I have been a strong supporter of the hospice movement ever since I came into Parliament—and, indeed, shortly before. I have been a supporter of St Frances Hospice in Berkhamsted, then for many years of St John's Hospice in Moggerhanger and currently of the Grove House Hospice in St Albans.
Any insights that I may have are not my own but are due to the fact that I was lucky enough to marry into a medical family. Under the inspiration of my father-in-law, the late Professor Charles Fletcher—a great expert on emphysema, which so injures old people—both our elder children are doctors in the NHS. Our elder daughter is a registrar in care of the elderly in Southmead Hospital in Bristol and our son and his wife are both general practitioners in south-east London. So if there is any merit in this speech, it comes not from me.
The hospice movement is one of the shining constellations in the firmament of the voluntary and charitable sectors. All governments are wise to cherish it and to work with it closely. As many noble Lords have said, it has developed a great deal over the past 30 years.
The first important development, which I strongly encourage, is that in addition to the wonderful work that it does in relation to cancer—both for in-patient residents in the hospices themselves and out in the community—it now treats other conditions that so often afflict those in the later stages of their lives. I refer particularly to heart failure, which can affect people for many years, angina, chronic emphysema and other conditions which obstruct patients' airways. In both these areas the medical profession is rightly seeking to work out how best to give palliative care to those who may never get better but who can none the less, with proper help, enjoy a valuable quality of life—largely at home—for whatever period is left to them.
As I understand it, it tends to be the very frail and the very old who are let down by our system, and those who are fading often find themselves forced to fade in hospital for lack of an adequate structure to give help at home.
Nursing care at home is immensely valuable. Families can be very good at caring for their loved ones. Indeed, old and frail people can be very good at caring for themselves at home if they can have, in particular, the advantage of three-times-a-day help, but they often have to wait many weeks, and perhaps months, before such help can be provided—if, indeed, it can be provided at all. Great efforts are rightly made to tie in the work of the National Health Service with local authority social services and, when available, the work of the hospices, both residential and out in the community. This is hugely to be encouraged.
An extra problem to be overcome is the fact that general practitioners, who are wonderful and often find the greatest satisfaction in helping their long-term patients in the last years of their lives, cannot necessarily be present out of hours—the out of hours service has to cope—and the systems of the hospice service and the NHS have to meet that particular problem.
St Christopher's Hospice in south-east London was one of the earliest hospices, started by Dame Cicely Saunders herself. It is once again showing the way by providing an excellent palliative care system for elderly patients in their own homes. They are looked after by the hospice team during the day and those hospices work closely with district nurses. In doing so, importantly, they are also able to provide cover by night.
However, the work is expensive. It is not, as I understand it—the Minister will correct me if I am wrong—at present supported by any extra funding from the NHS and the continuation of that service is under great pressure.
For all their wonderful work, once the need for medical intervention to a patient has ceased and the patient is stable but eventually dying, the hospital is not the ideal place to be. The nurses are inevitably busy. When the family are around the bed, it is all too likely that the patient in the next bed may need to use the commode or another confused patient may be wandering in the ward. Side rooms are at a premium and may be needed for a patient with an infection, so as an elderly patient one is lucky to get a side room.
I turn to costs. The costs of nursing care at home at its most intense are probably close to hospital costs, but that usually takes place for only a short period and a hospital bed is freed up. On a cost-benefit analysis, the benefits to a patient and the family are huge compared with the misery that can be suffered when one has to die in hospital, wonderful though the hospital services are.
The overall costs of hospice and specialist palliative care services are estimated to total some £450 million, of which 35 per cent is contributed by the NHS. One hundred and seventy million pounds is a modest figure compared to the total NHS spending today of around £60 billion. Professor David Taylor of the School of Pharmacy at the University of London estimates that every pound invested in hospice and home care can release some £2 worth of hospital services.
So may the message go forth from this debate that this work by hospices of caring for the very old and the very frail in their own homes deserves the Government's strongest support. It is not only excellent value for the NHS, above all, at a critical point in our lives; it is of enormous benefit to all our fellow citizens.
My Lords, it is a great privilege for me to congratulate the noble and learned Lord, Lord Lyell of Markyate, on his splendid maiden speech. I expected him, with his background as a former Solicitor-General and Attorney-General to speak with immense clarity and confidence, but I did not know that he was also going to speak in such a moving way. It was particularly moving for me because he emphasised so much the plight of very old and frail people. The noble and learned Lord will make an important contribution to this House. We will all be aware of the huge experience and the contribution he will make to all our deliberations. I wish him well and congratulate him again.
I also thank the noble Baroness, Lady Finlay, for having secured this debate, which is critically important. I congratulate the other speakers, because it is obvious that all of us are proud of the UK's record. We have a superb record of palliative care and world leadership in the hospice movement, which has spread to many countries all around the world. We know that people who are dying do not just need general care; they need personal, humane, gentle, loving care, right up and until they take their last breath. We also know that, unfortunately, with the best will in the world, the tight resources of the NHS mean that does not always happen. I agree with the noble Baroness, Lady Finlay, that sometimes that is because we do not get the integration of health and social care right. When people are suffering form a terminal illness, it is hard to separate one need from another. That is where our systems fall down sadly for many people.
I was angered when I read an article in the Guardian on
"some people still suffer a death which is medieval in its pain and distress".
That is absolutely unacceptable in a country such as ours that has such high standards in its health and social care. The Guardian article also said that that happens despite the huge advances in drugs and technological systems for care over the past 30 or 40 years.
This debate is so important because we need to talk more openly about dying and the process of dying. It is something that we will all face, and have already faced with our friends and families. So often, it is a taboo subject; one of the last taboo subjects. They are really dangerous subjects, because they often have dreadful results because of being taboo, so we have a result of poor treatment and bad care that remains hidden from the scrutiny that people deserve and the standards that should be available to everyone to protect us all.
Many people are ignorant, particularly, as the noble Lord, Lord Patel, has emphasised, people from ethnic minorities and older people from the general population. People are sometimes denied the excellent palliative care or hospice care that could be available to them if they knew how to make it available. We know that most people want to die at home because they believe that they will get more personal and loving care there than in hospital. Yet the majority of all people die in hospital. We must ask why that is and why only a minority benefit from hospice care or palliative care.
I agree with the noble Lord, Lord Patel, that hospice-type care must be available in multiple settings today. To spend your last days in a hospital ward is often to die badly. We have heard so many horror stories of neglect. We have heard of discrimination on the grounds of age. We have heard of very inappropriate settings and lack of privacy, among other problems. Care in a hospital could and should be as good as that in a hospice. One area of all general hospitals could be made into a hospice environment. After all, we have managed to ensure that most maternity units in the NHS incorporate an area that is gentle and friendly, which is a suitable environment, so crucial for when a child is born. When someone is dying is no less significant an event. We should have the same standards of environment suitable for that event too.
As the noble Baroness, Lady Finlay, said, since the Shipman case there is a big problem, which has been reported in a medics' survey recently, that doctors are more nervous and less willing to prescribe adequate pain relief to dying people since that tragedy. For some we know that pain relief is just not possible. Most of us want to be in control of pain at the end of our lives. One of the reasons why I supported the Bill proposed by the noble Lord, Lord Joffe, on assisted dying is partly because the safeguards built into it mean that palliative care must be delivered to anyone in that position. Therefore, we would have to have more palliative care available, and that must be a good thing. You cannot offer a service unless it exists. So, in my view, the amount of palliative care available has to increase.
I strongly support the efforts of Marie Curie Cancer Care and other organisations that are trying to ensure that everybody who wants to die at home can do so. There are gross inequalities in the distribution of palliative and hospice care. Although I congratulate the Government on their investment in this type of care, all noble Lords have outlined that it is not enough, and we need more resources if we are to get it right.
There also has to be a big cultural shift in attitude within the Department of Health and the NHS, especially about older people who often suffer from multiple conditions—not always cancer. We know that older people with cancer are far less likely to die in a hospice. The figure is 8.5 per cent of those who are 85 or over, compared with 20 per cent of all cancer deaths. We know that older people with dementia do not usually benefit from palliative care at all because it is not recognised as a terminal illness, although, of course, it is in its later stages. Even for those dying of cancer, NICE has concluded that the resources are inadequate, so there is a big demand.
My first experience of somebody close to me dying was a very young woman with a husband and two young children. Tragic though it was, her death was beautiful. Her experience and that of others in the same position should be the standard for us all, regardless of age, ethnicity, disability or cause of death. Dying is a part of our lives.
My Lords, the noble Baroness, Lady Finlay, should be congratulated on choosing a subject that will become increasingly important over the years. Not only are more of us surviving into old age because the diseases that used to polish us off before we reached three score years and ten are now better prevented and treated, but there will be a bulge of ageing people when the post-war baby boomers reach 80 or so around 2020 to 2030.
Terminal care, as many noble Lords have said, is appropriate not only for patients with cancer, but for many medium to long-term illnesses that lead inevitably to death, such as organ failure and some forms of dementia. Motor neurone disease is a distressing condition, as my noble friend Lord MacKenzie pointed out, which often needs palliative care towards the end.
Some 60 per cent of patients say that they would prefer to die at home, and another 20 per cent would prefer a hospice. Sadly, only 18 per cent of deaths happen at home and 4 per cent in hospices. A higher proportion of cancer patients die in hospices—20 per cent, as the noble Baroness, Lady Greengross, has just said.
As a doctor working in the community in north London, I was privileged to have the help of outreach teams from two hospitals—University College and the Royal Free—caring for dying patients at home. They were staffed round the clock by Macmillan-trained nurses, backed by a consultant in palliative care, with links to a famous hospice, Eden Hall.
It was a Rolls-Royce service that was greatly appreciated by patients, families and GPs alike. But for some time to come, it is not a model that can be replicated all over the country. There are not enough specialists or palliative care nurses.
However, several projects are running, which make use of existing National Health Service staff by training and helping to provide effective and satisfying palliative care, about which I shall speak more later if time permits.
In a completely different setting, last year in rural west Kenya on the shores of Lake Victoria I was able to see a community-based terminal care scheme in operation. It was operated by the NGO, ICROSS, which is run by a dynamic Anglo-Irishman called Mike Meegan. Care workers were recruited from literate, intelligent, but otherwise untrained, members of the local population. They were given several weeks' training for the specific task of caring for AIDS victims dying in their own homes. They had links with the local district hospital, which admitted patients to initiate treatment for opportunistic infections, but, once they were stabilised, continuing care took place in the community.
The benefits of the scheme were remarkable. First and foremost, the patients were hugely relieved to have a carer. A load of anxiety was shed and they became spiritually calmer. If further opportunistic infection occurred, they had ready access to the local hospital. One result of the scheme was that only 50 per cent of the hospital's beds were occupied by AIDS patients, instead of 90 per cent before the community-based care scheme started.
In the much more sophisticated context of the UK, the same principles can be, and in many cases are being, applied to end-of-life care in the community. It is very good news that the Department of Health has recognised that demographic and healthcare trends, quite apart from patients' wishes, require expanded palliative care services.
I am afraid that time does not allow me to give a list of all the projects and guidelines on good end-of-life care that have been initiated and supported by the Department of Health, which often contributes to or collaborates with the voluntary sector. Some of these schemes have been mentioned by noble Lords in their speeches. I could recite a list of them, but there is no time, so I shall refrain.
However, I am particularly impressed by the Gold Standard Framework, which was mentioned by the noble Baroness. It is based in east Birmingham and is led by a general practitioner, Dr Keri Thomas, who has drawn up, and enthusiastically promotes, a detailed scheme that could be applied to most GP practices to improve the quality of their end-of-life care. An initial evaluation of the scheme is very positive.
I think that I echo the noble Baroness, Lady Finlay, when I say that home-based care is not appropriate for everyone in the end stages of their illness, however much they would like it. Sometimes symptoms are so severe that they need institution-based care, for example, severe respiratory difficulties, double incontinence, or intractable nausea and vomiting. Such problems may arise in patients having home-based care and for them there should still be a speedy pre-arranged route into nearby institutional care.
That need not be an acute hospital. Hospices can cope with most severe symptoms, but there are simply not enough of them and they are unequally distributed, as the noble Baroness showed. A temporary solution is for certain wards or parts of a hospital complex to be dedicated to providing palliative care—as the noble Baroness described happening in Cardiff—if hospital staff can be persuaded to switch from a radical curative treatment-based outlook to a more gentle, caring outlook. It is sometimes hard for clinicians to stop treatment and to accept that the aim is to assist dying, rather than to prolong life.
I hope very much that my noble friend will be able to say that there will always be funds available to make Sir Nigel Crisp's aspiration a success. Two years ago, he said:
"Better care for the dying should become a touchstone for success in modernising the National Health Service".
It is a very good investment as, as other noble Lords have said, it will relive pressure on acute hospitals, and everyone agrees that palliative care ensures a dignified and peaceful end to people's lives.
My Lords, we are indeed indebted to the noble Baroness, Lady Finlay, for securing this debate and for introducing it so very ably.
In taking part I declare this interest: in the late 1980s I was responsible for much of the research and planning that led to the establishment of St Mary's Hospice, Ulverston in south Cumbria. I have had continuous involvement with it ever since and I am its current chairman. Nothing I have ever done has made more demands on my time and energy; at intervals nothing has given me greater anxiety and precisely nothing has given me such a sense of fulfilment.
I believe that the development of the independent hospice movement in Britain represents perhaps the greatest change for social good which has occurred in my lifetime. I base this rather extravagant sounding claim not entirely on what hospices have achieved but on what they might yet achieve if they are allowed the necessary freedom and space in which to develop.
Central to what I have to say this afternoon—it is a slightly different emphasis from other speakers—is that if we lose our independence, then to all intents and purposes the hospice movement that people have come to know and value will be destroyed. I know with what intensity it is valued by people, as I have seen at first hand the lengths people go to both in financial and voluntary terms to support their local hospice.
I am not alone in noticing that attractive, popular and successful activity in the independent voluntary sector can give rise to public sector resentment. This resentment is especially evident if money is perceived to be flowing to areas which it does not control. At its Worst, frustrated public bodies use or misuse their considerable power to hinder and obstruct.
Our hospice of St Mary's serves a population of 120,000 people. At today's prices the operation costs—not the fundraising costs—£1.7 million a year, which equates to £14 for every man, woman and child in the catchment area. That we have raised such sums is a huge tribute to our appeals team. In one of Britain's less rich areas it represents a generosity of spirit that compares extremely well with any other part of the United Kingdom. However, I am not confident that that is sustainable. We are felt by some to be asking too much and impacting too heavily on the work of other important local charities.
Against a government target of 50 per cent grant aid, and figures I have heard of 30 per cent, we get 10 per cent grant aid. Historically that has been all we have ever had. I do not know of any other hospice that gets less. I think it was nearly four years ago that the famous £50 million hospice package was first announced on the steps of our very own hospice, St Mary's, by Mr John Hutton MP with much press fanfare. Out of that extremely useful pot we have so far received not a single penny for core funding. Our local primary care trust has turned down all requests for support from that source and is only now offering modest financial packages for non-core services that we neither need nor want, and then with a raft of strings attached.
The Minister will say, with some reason, that funding is a matter between the PCT and ourselves. I merely say that I hope it is a matter of concern to him that a policy so publicly announced by his department should have so signally failed in terms of outcome. The truth is, of course, that the local PCT is broke and is also determined to control us by any means open to it.
The financial plight of primary care trusts certainly does not prevent them servicing a huge plethora of committees and working groups. We have to attend in person not one or five or 10 but 12 such committees and groups to retrieve the miserable 10 per cent funding to which I referred.
In regulatory terms the Healthcare Commission is hugely intrusive. The inspecting team spends two days in our filing cabinets and only 20 minutes on the ward and in day care. Our staff simply cannot understand what the purpose of such inspections is.
We measure PCT forms to be filled in by weight; one of the latest of those forms had us defending our performance in the last quarter on why we had not cured any of our patients. We estimate the staff costs of processing the paperwork alone generated by the PCT amounts to £18,000 a year. This absurd second-guessing does not happen with other hospices that I know of. I understand that the Government's admirable Compact Plus scheme, requiring public sector bodies to be more accommodating to the independent sector, has been adopted in other areas ahead of the official starting date. Perhaps the Minister will have something reassuring to say in that respect.
The universal and holistic way in which we in the independent sector understand and practise palliative care is something the NHS cannot hope to match, either in quality or in terms of cost. It is not designed to do so.
We have such qualities in our hospice movement, as the noble Lord, Lord MacKenzie, said. He spoke of the importance for patients of the feeling of safety. The other day I was talking to the young and talented chef at our hospice, and she was saying very movingly what a challenge it was, when any patient came in, to find out in the last days of their life, not only what they could eat, but to help them try and get some pleasure from eating it. Little details like that make such a difference.
I come now to a suggested way forward for funding. Since virtually all our patients are referred to us by the NHS, and since we care for them without charge, is there not a simple and fair formula for getting public sector finance into our hospices? Reflecting on various options that have been talked about lately, either we could be paid a sum for each patient that is referred to us—and remember how much money we are saving the taxpayer—or the public sector referrer might choose to buy a proportion of our beds and services annually.
A healthy and constructive partnership would result from such a course, and it would lead to a much lighter touch in terms of regulation. After all, the referrers will always have the choice of using or not using our services. The other judges and arbiters of our standards of care are the public. I see nothing wrong with that; indeed, I would see only good coming of their being rather more carefully listened to.
Finally, it seems likely that cancer will have ceased in 10 years' time to be the major life-threatening disease it is today. In our catchment area, because of the asbestos-related cancers from the former shipbuilding industry, we will sadly have those patients for rather longer. As has been said so eloquently and so importantly in this debate, there are other cruel diseases and tragic human conditions where our model of care will be ideally suited to people's needs. We would like to reposition ourselves over the next few years to meet such a challenge. It is a model that works and, beyond all doubt, that people want.
When the Minister comes to reply, I would welcome his reaction to my suggested funding methodology. In the important area of our longer-term development, perhaps he will be kind enough to reflect on what I have said, and write to me in due course. As I have illustrated, we have had rather a poor deal at the hands of his department. Rather than dwell on that, however, I would like to see a future partnership that respects our independence in the cause of maintaining and developing excellence in palliative care. At the moment a threat hangs over the hospice movement, and I should like to see it removed.
My Lords, I thank my noble friend for giving your Lordships the opportunity to discuss this important and emotionally moving subject.
My noble friend Lady Finlay is a professor of palliative care, and is an expert. I speak from having had the honour of being the designated person to take decisions on behalf of someone dying of HIV/AIDS. I am also president of the local branch of the Motor Neurone Disease Association, and I have a husband with multiple disabling conditions, complicated by diabetes.
Last year my husband had an enormous abscess on his lower gut, and spent three weeks in intensive care. I know only too well that one has to take one day at a time, and hope is of the utmost importance in these times. I agree with my noble friend that it is so important that real choice and personalised care is provided to all people facing the end of their lives. Palliative care is an approach to care that encompasses medical, psychological, social and spiritual aspects. It includes terminal care and, when possible, rehabilitation.
For a moment, I would like to dwell on the spiritual aspects which mean so much to some people, especially around this time. I, myself, as a carer, get a great resource from the words of Pope John Paul II. He said:
"Human life is a precious gift to be loved and defended in each of its stages. The Commandment 'You shall not kill', always requires respecting and promoting human life, from its beginning to its natural end. It is a command that applies even in the presence of illness and when physical weakness reduces the person's ability to be self-reliant".
When I heard that a hospital had decided to remove its crucifix from the hospital chapel and a Maltese lady was distraught, I could understand her feelings. Sometimes people need the chapels to pray in or just to meditate in sometimes, especially around the difficult time of coming to terms with terminal illness or death.
Of course we should respect everybody's faiths and beliefs, but it is wrong to be negative and take away such things as crucifixes, which can give help and comfort; surely, one should have chapels for Christian faiths to share and another room for the use of non-Christians. I believe that is what happens here in Parliament and it must be the correct course to take.
The Motor Neurone Disease Association believes that specialist palliative care should be available to anyone with MND in a setting and at a time of his or her choice. Many people with MND are unable to access the palliative care services they require. In a survey carried out by the association in 2005, only 39 per cent of people with MND had been referred to specialist palliative care services. There are unacceptable geographical variations in the quality of service provision. That can have a negative impact on the quality of life of people with MND and their families.
All people in need of palliative care, whatever the condition, should have a quick service to occupational therapists and the correct equipment, such as wheelchairs, hoists, slings, special mattresses to prevent pressure sores and so on. The wheelchair service needs updating and upgrading, as does the suitable equipment for people in hospital.
On people with a swallowing problem, I discovered that adults do not have access to much-needed speech therapists, who can give vital advice in their lives, if they live in the communities of north Yorkshire. A child can get the service, but an adult has to wait a long time for an appointment in hospital. With so much emphasis on primary healthcare, I ask the Minister if he can encourage a better, quicker service for all who need it in hospital, hospice or at home, when they are in this condition.
Hospices have historically been funded by cancer charities, so services have focused on people with malignant disease. I hope your Lordships agree that it is important that other service users, such as people with life-limiting non-malignant conditions, are given equal treatment. Palliative care should be determined by clinical need and not disease type. But if a person's wish is to remain at home, all efforts should be made to make that possible.
I hope that the National Health Service framework for long-term conditions will help to co-ordinate and promote better services for those people needing palliative care. I, too, would like to congratulate the noble and learned Lord, who has, with all his efforts crossing London on this day, made a splendid maiden speech.
My Lords, I am grateful to the House for its indulgence in allowing me to speak during the gap. I am also grateful to the noble Baroness, Lady Finlay, for initiating this valuable debate. I declare an interest as chairman of St John's Hospice in north London, which is one of the relatively few hospices that offers palliative care for three of the main life-threatening complaints—cancer, HIV/AIDS and, I am happy to reassure the noble Lord, Lord MacKenzie, and the noble Baroness, Lady Masham, motor neurone disease. I am also happy to reassure the noble Baroness that today the hospice has made available six emergency beds for St Mary's in the light of today's events.
My message is simple; it has been the theme of the debate. Governments—this applies to this Administration and the previous one—have underfunded the hospice movement by at least 50 per cent. The figure of 35 per cent was mentioned by my noble and learned friend Lord Lyell in his excellent and informative maiden speech, and by the noble Lord, Lord Hayhoe. It means that the balance has to be funded through the good will of the public. I do not like to use the word "cynically", but the Government have cynically traded on that in the assurance that the shortfall will be made up.
Furthermore, while other branches of the National Health Service have been given a 5 per cent uplift this year, the independent hospice movement has had to be content with 3 per cent. Why? In our case, we feel sensitive about that, because all our clientele come from the National Health Service through contracts with 11 primary care trusts across London.
Our hospice is fortunate, in that it is part of the same charity and on the same site as the Hospital of St John and St Elizabeth, for which the hospice is its charitable objective. A large part of the hospice's establishment cost is picked up by the hospital. Other hospices that stand alone are less fortunate. If that underfunding continues, there is a continuing danger that the viability of some of them will be called into question.
The hospice movement in London is overwhelmingly independent. I venture to suggest that hospices give huge support to the National Health Service in releasing acute hospital beds, providing high-quality palliative care and, as I have said, giving the National Health Service a service on the cheap, frankly. We are grateful for the money that the Government have made available to the hospice movement in recent years, but I urge the Minister and his right honourable friend the Secretary of State to revisit the problem.
My Lords, I too ask the indulgence of the House to make a brief intervention. I am told that I can do so as long as I am finished by four o'clock; I hope to be finished by 3.59 if I try very hard.
I have two points to make. Before I do so, I join in congratulating the noble and learned Lord, Lord Lyell of Markyate, on his marvellous maiden speech. He was my first pupil at the Bar. I tried hard not to take him—not because there was anything wrong with him, but because I did not think that I was adequate to take a pupil of such ability at that early stage in my career. His father insisted, and I am very glad that I took him as a pupil. I am not at all surprised that he showed in his speech today that the qualities that he began to show then have flourished and blossomed.
As a member of the board of a hospice, and as one who has seen people in the last days of a terminal illness desperately needing what can be provided by the hospice movement, I realise how important the debate has been. I too congratulate and thank the noble Baroness, Lady Finlay of Llandaff, on and for raising the issue. It is important as a public discussion, and in terms of asking the Government to do more than they already generously do.
My second point is to emphasise, as the noble Lord, Lord Patel, stressed, that we are not talking only about cancer. People with many other diseases—for example, motor neurone disease, which increasingly seems to be a problem—also desperately need the help of the voluntary movement. As has already been stressed, the fact that it is voluntary should be emphasised in any debate of this kind.
Tribute has been paid to Dame Cicely Saunders and I add the warmest tribute to her work. The most informative, moving and agreeable fund-raising dinner at which I ever spoke was in support of Dame Cicely's hospice and her movement. There are many other volunteers. Who, I ask rhetorically, could have done more to help the joint care home movement, of which I saw something as Prior of the Order of St John, or to help the Dame Cicely movement than Her Royal Highness Princess Alexandra? She has given the greatest support in this area, beginning at the top and moving down, as have many others.
I apologise for not having put my name down to speak in this debate. I thank your Lordships for giving me two-and-a-half minutes in which to contribute, and I congratulate the noble Baroness, Lady Llandaff, on her speech.
My Lords, I, too, thank the noble Baroness, Lady Finlay of Llandaff, and congratulate her on initiating this debate. I also congratulate the noble and learned Lord, Lord Lyell of Markyate, on his maiden speech. I have admired him from afar for many years. I hope that we shall hear him on many occasions, including on this subject, about which he is so knowledgeable.
Like everyone who has spoken, I declare a variety of interests. I am vice-president of the North London Hospice, I have written books on the subject of palliative care for those of different faiths, and I have a general involvement in the hospice movement. Formerly, I chaired an NHS trust that provided palliative care, and I was chief executive of the King's Fund. I shall not list any more.
It has been extraordinary to be present for this debate, hearing people speak with great passion and enormous knowledge on the subject of palliative care in this country. It was wonderful to hear the noble Baroness, Lady Finlay, telling some touching stories about the kind of things that people want and need at the very end of their lives and to hear the noble Baroness, Lady Greengross, talk, in particular, about the needs of older people.
Like the noble Lords, Lord Hayhoe and Lord Newton, and many others, I pay tribute to Dame Cicely Saunders, who was one of the people who introduced me to the hospice movement. When, a long time ago, a group of us talked to Dame Cicely about the possibility of setting up a multi-faith hospice, we discovered that she had sent away all other groups saying, "You don't need to do that to set up a home care service". In our case, she said, "It is needed". To a very large extent, hospices have an overwhelmingly Christian atmosphere and there is a need for a hospice that will specialise in a multi-faith approach and that will teach and disseminate different ways of thinking about palliative care. For her enthusiasm in that, many of us have reason to be very grateful.
We also have reason to be grateful to someone who has not been mentioned today—Dame Albertine Winner, who was the first medical director of St Christopher's Hospice until Dame Cicely managed to requalify from her position as a nurse to become a doctor.
I take slight issue with the noble Lord, Lord Joffe, who thought that there were a small number of people who liked to be in control of their lives and for whom palliative care might not be suitable. I do not think that the noble Lord ever had the pleasure of meeting my parents. They were the kind of people who liked to have control over their lives. At the end of their lives—neither of them suffered from cancer—they both received palliative care of the highest order. They were totally in control of the care they were given and the amount of medication that they received. That is very important. Some people do not want anything to do with palliative care but, in general within the palliative care movement, there is increasing recognition that the patients themselves take control of how things work.
Like many other noble Lords, I believe that there is one issue that we should lay before the Government today, and I hope that the Minister will be able to say something about it. That is the lack of availability of palliative care for most conditions other than cancer, although there is some availability for motor neurone disease and for AIDS. There is clearly a question about how that works at present in this country. Others have spoken about children's hospices and the possibility of dying at home. It seems to me that we should take seriously the evidence of the noble Lord, Lord Newton, that about 25 per cent of people prefer to die at home. We should ask the Government what measures they will take to ensure that that is increasingly possible, particularly for those who do not have cancer.
I became involved in this matter wearing my original rabbinic hat. My particular area is recognition of cultural and religious differences in palliative care and the need for sensitive handling of differences in palliative care, echoing very much what the noble Lord, Lord Patel, said. In some areas and in some hospices it is very much better than in others; for example, it is the main raison d'être of the North London Hospice. However, in my NHS experience, when I covered a patch that involved two London boroughs, it was infinitely better in one borough, Camden, than it was in the other, Islington. It is difficult to explain that, except for historical reasons.
Like the noble Lord, Lord Rea, I want to throw a bouquet to Eden Hall, the Marie Curie hospice in Hampstead and the Royal Free Hospital palliative care team who seem to me to have it about right, dealing with an incredibly difficult and diverse population. It is enormously sensitive in dealing with people who do not have cancer. But to some extent, they are the exception and they are one of the beacons in London where availability of palliative care for conditions other than cancer is not very great. It is by no means universal. We can all tell stories, both good and bad.
Some noble Lords will know that the Lisa Sainsbury Foundation was set up by the Sainsbury family trust, particularly to train nurses to deal with different divergent, ethnic, religious and spiritual issues. It no longer carries out that work. It made a valiant attempt but it was the kind of valiant attempt that, having started in the independent sector, now needs to be taken up by government. I ask the Minister how much work is to be done in that area. I believe a promise was made in the response to the health committee's report on palliative care that further work will be done. It would be good to know how far that has gone.
This does not concern only religious and ethnic backgrounds; it also concerns professional backgrounds. One only has to ask a palliative care team about their nightmare patients and they will tell you that it is healthcare professionals, as they ask far too many questions and they want to know far too much about their own final diagnosis. I should think most Members of your Lordships' House would be very similar. Also they do not take advice and they are extremely difficult. That is only natural, given that they are healthcare professionals.
That can also apply to people who are isolated from their home background. They receive the diagnosis that they are terminally ill in a specialist regional centre, miles away from home. They have bad news and there is very little availability of liaison teams, liaising with local palliative care services or liaison between specialist regional centres and local services. Even more pertinent perhaps is a case made brilliantly by Help the Aged in a report that it co-published with the policy press earlier this year, in which I was involved.
There are also issues of discrimination on the basis of age or not having a malignant disease, about which we have heard so much today, or on the basis of living alone. If one is old and lives alone and one does not have the strength to argue for the kinds of services that one wants, very often, as the noble Baroness, Lady Greengross, said, one does not receive the treatment one wants. That is even more apparent with people who have end-stage dementia. We know that dementia at the end is largely a terminal condition. We know that older people generally receive far less in the way of palliative care. Often they will end their days, if they have a terminal disease, in a care home where the staff have rarely received any training whatever in dealing with people with an end-stage disease.
A question that perhaps we should lay before the Minister today is what will be done to ensure the training of care assistants and relatively junior staff in care homes where many of our frailest older people will end their lives. It seems to me that we can do much at the top end—training doctors and nurses—but we have been slow to consider the training needs of care workers and care assistants, who often provide much of the personal care to frail and vulnerable older people at the end of their days.
We all want a guarantee of palliative care to all who are dying of whatever condition. The Government have promised that, and we must congratulate them on what they have already done in the field of palliative care. I think that we all admire the Gold Standard Framework, which the noble Lord, Lord Rea, has already mentioned, and ask that government roll it out across the country.
However, what will the Government do in the light of the relative underfunding of care homes? The King's Fund's London inquiry into the care market made it very clear that there is still tremendous underfunding in care homes. That underfunding makes it hugely difficult for care homes to improve the quality of their end-of-life care. What will happen when we have a large number of enthusiasts for palliative care in this country—the noble Baroness, Lady Finlay, has already mentioned those strong, feisty, tough people—in healthcare teams wishing to provide a palliative care service and there is no available funding? Take, for instance, Doctor Mendes Da Costa's GP practice in Kidderminster—the well known Kidderminster that is always a nightmare. What will we do to allow local populations to make decisions about what palliative care is available? To what extent will it really be down to local PCTs and to what extent will government give greater guidance?
I am running out of time, but I ask the Minister to answer two questions. First, we have heard that the Government will meet their manifesto pledge to double investment in palliative care services. We all want to know how much money that will be, what the basis of the calculation is, and when the money is coming. Secondly, as the noble and learned Lord, Lord Lyell, mentioned, my former colleague Professor David Taylor, at the School of Pharmacy, argues that every £1 spent on palliative care releases £2 for other use in the National Health Service. Do the Government accept that calculation? If so, will they therefore increase their funding of palliative care accordingly?
The palliative care movement and hospices are dearly loved in this country. We have already heard Nigel Crisp's description of palliative care services as the touchstone of a modernised health service. I hope that the Minister can reassure us that more will be done to help those wonderful services to grow, improve and increase their reach to the whole country.
My Lords, when it comes to the noble Baroness, Lady Finlay, opening a debate on the subject of palliative care, all I can say is, in the words of the old song, "Nobody does it better". To listen to her today is to be reminded—although we do not need reminding—how fortunate we are to have her as a Member of this House.
The first point that many noble Lords have emphasised is that when we talk about palliative care, we are talking about more than just the relief of physical pain and more than just activity in hospices. The noble Baroness brought out well that palliative care in its fullest sense embraces a wide arena of activity in a wide range of settings. The multi-disciplinary team that delivers specialist advice and pain relief to a terminally ill patient is an indispensable part of good palliative care. But, equally, the daily business of administering symptom relief, comfort and advice to the patient is as much that of the general practitioner, the physiotherapist and the care-home worker—the professional people who look after the person day to day—as it is of anyone else. In fact, the person who comes to sweep and tidy the house of someone who is terminally ill is administering a kind of palliative care if by doing so they are easing the patient's worries and making life generally more bearable.
That is why the public debate about palliative care must recognise not only how care of the dying fits into mainstream health and social care but also that it behoves all professional people involved in the care of patients to understand the part that they can play in delivering what Sir Nigel Crisp has memorably called—it has been mentioned often today—a touchstone for success in modernising the NHS. The great thing about the NHS over the last decade or so is the way in which it has become a more patient-centred service. If ever there was a time when patient choice was pre-eminently important, it is surely at the end of life. People who say, somewhat loftily, that patients do not really want choice should just think of that.
My noble friend Lord Newton rightly mentioned, as did the noble Lord, Lord Joffe, and a number of others, that this country has led the way in developing the whole ethos of hospice care, and that we have much to be proud of. That is true. Nevertheless, we should be under no illusions. We still have an enormous amount to do.
The trouble is, as we have heard from many speakers but especially my noble and learned friend Lord Lyell of Markyate in his wonderful maiden speech, that access to palliative care is decidedly patchy. The inequity of access exists not just between different areas of the country, it is also a function of how old you are and what sort of illness you have. That is perhaps the most significant imbalance of all. The south of England, being relatively affluent, has witnessed the flowering of charitably-funded hospice care on a much wider scale than many socially-deprived areas, where the need for palliative care is at least as great, if not greater.
Most people believe that hospices should not be state run. The noble and learned Lord, Lord Slynn of Hadley, is absolutely right. We want them to retain their predominantly charitable ethos and character. The fact remains, however, that, having contented ourselves with a laissez-faire approach to hospice provision, at least thus far, we have landed ourselves with a problem.
Equally, the perceived white, middle-class, Christian underpinning of the hospice movement—I emphasize the word "percieved"—has, I am sure, served to deter, however unwittingly, many members of the ethnic minority communities from trying to access hospice care. Often, there may not be enough information to enable some of them to be made aware of it.
Possibly the most troubling imbalance in provision, however, is the imbalance between terminal cancer care and the care of other conditions. This point has been made many times this afternoon. Of those looked after in hospices, 95 per cent have cancer. The NICE guidelines on palliative care are cancer-oriented. Yet three-quarters of those who die in this country die from other things. Help the Hospices say that at least 300,000 people a year who need palliative care are not getting it. The percentage of people who die in hospital is higher than in many other EU countries. Like the noble Baroness, Lady Greengross, some of us have seen how bleak and impersonal dying in hospital can often be.
We hear from respected bodies such as the British Lung Foundation, the Motor Neurone Disease Association and the Alzheimer's Society how difficult it is to secure specialist palliative care for non-cancer patients. Part of the trouble is that, for chronic lung disease and dementia, the illness has an uncertain trajectory and can progress quite slowly. With motor neurone disease, the trajectory is fairly swift and certain. The kind of care a patient needs at the end of his life, however, can be extremely labour-intensive and complex. Many hospices, with the best will in the world, are simply not resourced to deliver more than a certain amount of that sort of care. Professor Mike Richards has suggested one way around this: to give those providing general palliative care a better understanding of the key skills that have been developed in specialist palliative care. That idea is fine but, of course, it is nothing like a complete answer if we really want patients to have choice.
One barrier is money. In the NHS Cancer Plan, the Government promised an extra £50 million a year to fund specialist palliative care and, in 2003, a one-off £12 million payment to support the implementation of, among other things, the Gold Standards Framework and the Liverpool Care Pathway. All that is very welcome. As my noble friend Lord Cavendish told us, however, it is perfectly clear that the money has not been reaching the places it was meant for. It is being swallowed up by other programmes. The Government promised the Health Select Committee in another place a full report on the use of the £50 million, but, as far as I know, that report has not yet been produced. It will be interesting to see what it says. Meanwhile the attitude of Ministers appears to be that it is up to PCTs to decide on their own local priorities, and if that means not spending their full allocation on commissioning palliative care, then so be it. I venture to say to the Minister that for most of us that is not good enough.
What are strategic health authorities doing? How are they performance-managing trusts on the way that specialist services are being commissioned and NICE guidance is, or is not, being followed? If the delivery of palliative care really is the touchstone for success in modernising the NHS, why is it not being recognised more vigorously? The Select Committee report graphically brought out the current weakness in the commissioning process, not least the disjointedness between trusts and social services. Many palliative care networks have no social care partners in them at all.
So we really need to ask the Minister what steps are being taken to encourage and strengthen commissioning of these services, particularly joint commissioning by PCTs. With the advent of payment by results in two years' time, the full cost of palliative care services currently funded from charitable sources will have to be funded from PCT budgets. But without the tariff being set, we still have no real idea of how much money PCTs will need to find, nor how much extra funding they will be given to cover it. These are issues of considerable concern to those working in the hospice movement, and it would be most helpful if the Minister could shed some light on them when he replies.
To give more patients the opportunity to access palliative care, we can call for all the obvious things: funding, professional training, more respite care for carers, the Gold Standards Framework and so on. But there is one simple-sounding thing that could do much good and which I believe we would do well to bear in mind, and that is better communication. Better communication between doctor and patient will open up more channels of opportunity. Better communication between families and hospital staff will open up better levels of understanding about the available options and the patient's wishes. Communication between those providing specialist care and those providing more general care will spread good practice. Communication between health and social services will improve and speed up commissioning. Without proper communication, we cannot do justice to the core principle of the hospice movement, so aptly mentioned by my noble friend Lord Hayhoe, which is respect for the individual. Indeed, it is the skill of looking after a patient as an individual that marks out the good doctor, nurse or carer. That thought, as much as any other, should, I venture to suggest, impel the Government and the NHS as they carry the palliative care movement forward.
My Lords, I am grateful to the noble Baroness, Lady Finlay, for raising this very important topic for discussion today, and to other noble Lords for their contributions. The noble Baroness has made a major contribution to the field of palliative care through her work as a consultant in palliative care at Velindre NHS trust and at the Holme Towers Marie Curie Centre, which she established. She is an acknowledged world authority on the care of terminally ill cancer patients and is well qualified to lead today's debate, as she demonstrated. On behalf of the Government, I congratulate her on her public conversion to targets today.
I also pay tribute to the work of Dame Cicely Saunders, who has done so much in this area. She started her iconic hospice very near where I live today. I am sure we send her our best wishes. I also congratulate the noble and learned Lord, Lord Lyell, on his well informed and humane speech and on the real commitment he showed in reaching this debate today. As a health Minister, I commend him for the commitment to exercise that he has shown.
I recognise that the diagnosis and treatment of a chronic and serious disease can have a major impact on the quality of patients' lives and those of their families and carers, as noble Lords have described. Palliative care seeks to address those needs, and we want it to be available to as many as need it, irrespective of clinical condition or their cultural backgrounds. I had some direct experience of watching someone die very slowly from motor neurone disease, and I realise how much they need that support and care in those final days.
In seeking to advance palliative care, we are seeking to advance a holistic care by multi-professional teams, for people, their families, and carers, where the illness may no longer be curable. It should enable patients to achieve the best possible quality of life during the final stages of their illness. It should address all the needs of those patients such as symptom control, pain relief and, importantly, emotional, psycho-social and spiritual needs. That support and care should be provided to patients and to their families, friends and carers both during the patient's illness and into bereavement. That is our aspiration.
As a Government, we fully recognise the importance of providing effective and efficient palliative and specialist palliative care service and that the advances provided to many people in recent years must be extended more widely to more people. Those services need to be available in the community, in hospitals, in care homes and in hospices. The principles of palliative care should apply equally across all conditions and in all settings. Those points were well made by noble Lords in the debate, and we agree fully with them. Ensuring that patients have access to the palliative care services that they need presents a number of challenges, as noble Lords have recognised and we recognise as well as a Government.
I shall briefly set out the Government's strategy for addressing those challenges and building on the progress that we have made over recent years. I am grateful to the noble Baroness, Lady Finlay, and other noble Lords for the recognition that progress has been made. I shall try to be as specific as I can in responding to the issues raised in the debate.
First, much of the specialised care that people have described today needs to be provided by health and other professionals who specialise in palliative care, such as those working in hospital specialist palliative care teams or in hospices. However, in most instances and for most patients, it is almost inevitable that palliative care will be delivered by people who are not specialist palliative care staff. That includes a range of professionals and carers such as GPs, district nurses and ward staff.
We have to improve the palliative care skills and awareness of a wider group of health professionals so that all are able to provide palliative care as and when required. That is important and it is the way in which we want to progress. It will not only widen the number of staff able to provide such care but also allow people to exercise choice in where they are cared for and where they die. We know that most people say that they would prefer to be cared for and die at home if they had a terminal illness rather than go into a hospice or hospital. However, the reality is that only 20 per cent of all deaths occur in a person's own home, with a further 20 per cent dying in care homes, which of course for many older people is their own home. Providing higher quality end-of-life care to all who need it, where they need it, will be a real marker of success for the NHS. We are trying to bring choice to the forefront of healthcare in this country, and choice in palliative care and end-of-life care are key areas that we are working on and, as has been acknowledged today, making some progress on.
For example, between 2001 and 2004 we invested £6 million to improve the training of district nurses in the principles and practices of palliative care. That funding has enabled participation by over 10,000 nurses, which is one in four district nurses, together with many other healthcare professionals, in continuing their professional development programme. The programme's aim was to give primary healthcare teams the confidence to support patients with advanced cancer and their carers, to help patients to stay at home for as long as possible during their illness, and to die there if they wish and if circumstances permit.
Secondly, the White Paper, Building on the Best: Choice, Responsiveness and Equity in the NHS, highlighted the importance of choices at the end of life and emphasised the need to enable patients to make choices about where they would prefer to live and die.
Following on from that, we have instigated our end-of-life care programme. Working in partnership—a word rightly used much today—with organisations like Marie Curie Cancer Care and Macmillan Cancer Relief, the programme will invest £12 million over three years to provide training for staff working in general practice, care homes and hospital wards. This means that all adult patients nearing the end of life, regardless of their diagnosis, will have access to high-quality palliative care and will be able to choose, if they wish, to die at home.
The initiative will specifically support the wider rolling out of tried and tested tools, including the gold standards framework to which a number of noble Lords referred, and the Liverpool Care Pathway. These tools were recommended in the NICE supportive and palliative care guidance and endorsed by the Health Select Committee.
I will give a few examples of how the NHS is rolling out new end-of-life care programmes. In Manchester, they are addressing the requirements of people with mental health needs who are approaching the end of life. In West London, the focus includes working with people with learning difficulties and those in prison; while in Dorset and Somerset, they are strengthening out-of-hours emergency care services. One particular priority, addressed by all areas, is rolling out the capacity of care homes to improve here, in order to reduce the number of inappropriate admissions to hospital in the last week of life.
We have also made progress on other aspects of palliative and specialist palliative care. We believe that a successful, mature and sustainable partnership is essential between government, the NHS and the voluntary sector at both national and local level; one that values the contributions of all, while being critical and integral to good quality, responsive, person-centred health and social services. Noble Lords have rightly mentioned the contribution that social care has to make in this area.
I acknowledge that the voluntary sector has led the way in developing palliative care services in the United Kingdom. Indeed, it continues to provide over half of palliative care provision. Organisations such as local hospices—a number of which have been mentioned today—Marie Curie Cancer Care, Macmillan Cancer Relief and Sue Ryder Care have made an invaluable contribution in providing care. They have guided and implemented government policies and instigated innovative and exciting developments. I pay tribute to them all, and to the voluntary sector's particular overall contribution in this area. I know, as former chairman of the National Council for Voluntary Organisations, that the independence of the sector is much valued, and that it will defend that independence jealously.
We will work away at strengthening further the partnership between the Government, the NHS and the voluntary sector. It means addressing that sector's particular concerns, including those of funding.
I turn now to the issue of funding in more detail. In 2000, it was estimated that the voluntary sector in England was contributing £170 million per year to specialist palliative care services—hospices, home care and hospital services—while the NHS was contributing £130 million. The Government therefore pledged, in the NHS Cancer Plan, to invest an additional £50 million per annum in specialist palliative care services for adults. This was to help to tackle the inequalities in access to services, and to enable the NHS to make a realistic contribution to the costs that hospices incur in providing agreed levels of service.
To support this commitment, Ministers set up the national partnership group for palliative care. This has a key membership from the NHS, local, voluntary and NHS hospices, major national charities and the Department of Health. Its role is to develop a new approach to palliative care funding and planning. For the most part, this has provided an excellent model of partnership working at both national and local level—although I notice that the noble Lord, Lord Cavendish, has been less than enthused about the relationship between his local hospice and the PCT. No doubt, the PCT and the strategic health authority will study his remarks carefully. I will certainly ensure that their attention is drawn to the terms of this debate.
The pledge in the NHS cancer plan has been delivered. The extra money has been allocated and it is for the most part being used effectively to improve services for patients throughout England.
I hope that noble Lords will recognise that we are investing considerable extra resources in the NHS. Those resources have doubled since 1997 and are now increasing to more than £92 billion in 2007–08. We are working with a very large organisation to which we have to devolve priorities. We have to move away from any attempt at command and control from Richmond House. It is inevitable, therefore, that primary care trusts are responsible for commissioning and funding local services. They have to be able to use these resources to deliver on both national and local priorities, including palliative care.
In today's NHS, it is very much down to people at local level to use the extra money available for local priorities and to ensure that services such as palliative care are commissioned and provided. We rely on local communities to make their voices heard in these areas.
In future, Payment by Results and the national tariff for the various healthcare resource groups will radically change the arrangements for funding providers of care. This will ultimately benefit patients as providers are rewarded for their efficiency and quality, and patients can make decisions that do not revolve around price. Work is under way to develop a new version of the healthcare resource groups and national tariffs for a variety of services, including specialist palliative care. This work is being supported by an expert working group, the membership of which includes representatives of both the NHS and the voluntary sector. The national tariff, when introduced for specialist palliative care, could provide the basis for the full cost recovery which was recommended by the Treasury's Cross Cutting Review of the Voluntary and Community Sector in Service Delivery. That review stated that,
"funders should recognise that it is legitimate for voluntary and community sector providers to include the relevant element of overheads in their cost estimates for providing a given service under service agreement or contract".
The national tariff will ensure that, in future, all providers of services to NHS patients, across all sectors, are paid on a transparent and fair basis for the services that meet patients' needs. The emphasis will therefore be on effective negotiation between contracting partners to deliver the best in patient care.
The noble Earl, Lord Howe, made an eloquent point on commissioning. The Government are committed to strengthening commissioning in this area. Only this morning, I spoke to a conference about strengthening and developing practice-based commissioning, and improving strategic commissioning in this country. It is concomitant with moving forward on Payment by Results that we strengthen commissioning in this country, not only for palliative care, but for a range of other services.
The noble Baroness, Lady Finlay, raised the subject of delayed discharges legislation. I assure her that it has always been our intention to extend the delayed discharges legislation to other patient settings following consideration of the benefits for each patient group.
Another area in which we have made progress is addressing inequalities in accessing palliative care service provision, although I freely admit, as noble Lords have said today, that we still have a considerable way to travel here. The historic development of hospice and palliative care services has often led to a concentration of hospices in more affluent areas and a shortage of services in areas of social deprivation in particular, as the noble Earl, Lord Howe, made very clear. There is no disagreement between us on that.
The greatest inequity, however, relates to the comparative lack of palliative care services for patients with advanced incurable illnesses other than cancer, as other noble Lords have said.
The sustained increase in funding which we are providing for the NHS, including the higher levels of funding for the 88 spearhead PCTs in deprived areas, will enable the NHS to continue to deliver improved services and to tackle inequalities. I expect palliative care in these areas to benefit from the extra resources that are being focused on it.
Let me reassure your Lordships, particularly the noble Lord, Lord Patel, that there are a number of examples of good practice where specialist palliative care service providers are working closely with minority ethnic communities to make their services more culturally sensitive. All service providers in today's culturally diverse Britain will need to show their services reflecting the ethnicity, faith and other features of the local populations they serve.
Building on the Best specifically commits the Department of Health to tackle inequalities in palliative care provision. This is the objective of our end-of-life care programme and was one of the key objectives in the £50 million programme we have already discussed.
Your Lordships will also be aware that we have published a number of national service frameworks. All of these, particularly those for children, for renal services, for long-term conditions and for older people, stress the importance of palliative care and end of life care and the importance of cultural diversity. Many of the initiatives we have taken in the field of cancer, including the training of district nurses that I have mentioned and the supportive and palliative care guidance published by NICE, will be of benefit to patients with other conditions as well as to those with cancer.
A number of noble Lords mentioned palliative care for children. I do not want to dwell on that too long, other than to say that we recognise the need to make progress in this area. The National Service Framework for Children has set standards for local authorities and others to ensure that children's palliative care services provide high-quality and sensitive support.
We are not complacent about this progress and we know that more needs to be done. A number of noble Lords have reminded us of our general election manifesto commitment and we are working closely with all who impact on its delivery. A great deal of work will be taken forward in the coming weeks. I pray in aid that since the election we have been in office for only two months. We are entitled to a little time to work in partnership with others in developing the arrangements for implementation.
I know we are a government in a hurry and a government that make progress on their commitments, but we need to work with people such as Mike Richards, with the voluntary sector and with Marie Curie Cancer Care to develop the way forward on that commitment. We will honour the commitment and take matters forward.
As many noble Lords will know, the Government have announced that they will be holding a major public engagement exercise on consulting the public about services outside hospital. This will enable us to address some of the end of life concerns that people have.
I thank noble Lords for their contributions to the debate. I end by quoting the excellent article in the Guardian today by Tom Hughes-Hallet, the chief executive of Marie Curie Cancer Care. He said:
"Surely it is society's responsibility to ensure that everyone can die with dignity. That means they should receive the proper care and support they deserve".
That is our mission in this area.
My Lords, I am most grateful to all noble Lords who have spoken in the debate. I am particularly grateful to the noble and learned Lord, Lord Lyell of Markyate, for having chosen this debate for his maiden speech, which we all enjoyed enormously. I am also grateful to the Minister for outlining what the Government are already doing to ensure that state-of-the-art palliative care is rolled out faster. His recognition of its importance and the need to do more will hearten all those working in hospice and palliative care.
The way in which society responds to human tragedy in every form, shoulders its responsibility and works tirelessly is a reflection of its dignity and its values. I beg leave to withdraw the Motion for Papers.