Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 1 - 19)

THURSDAY 25 MARCH 2004

PROFESSOR MIKE RICHARDS, PROFESSOR STUART TANNER, MRS JANE SCOTT AND MS SUE HAWKETT

  Q1  Chairman: Colleagues, can I welcome you to this first session of our inquiry into palliative care and welcome particularly to the witnesses. Thank you for your written contribution to the evidence and we are grateful for your attendance. Could I ask each of you to introduce yourself briefly to the Committee?

  Ms Hawkett: I am Sue Hawkett, Nursing Adviser to the Cancer Policy Team and also Policy Lead for Supportive and Palliative Care.

  Professor Richards: I am Professor Mike Richards. I am the National Cancer Director, and prior to being in that post I was Professor of Palliative Medicine.

  Professor Tanner: I am Stuart Tanner. I am a paediatrician from Sheffield and Adviser on Paediatrics and Child Health to the Department of Health.

  Mrs Scott: I am Jane Scott. I lead on Child Health Policy at the Department of Health.

  Q2  Chairman: Can I begin by asking you to offer just a sort of sketchy overview of what you see as being the key issues, the central issues, which perhaps, as a Committee, we should be addressing? I think I speak for most of the Committee in saying this is the first time I have looked into this policy area. Many of us, I think, are unfamiliar with this area and we welcome the opportunity to look at it. Before getting into some detailed questions, can each of you say briefly what you think are the key points we ought to be looking at?

  Professor Richards: If I may start on that and then hand over to Professor Tanner to deal with the child health care aspects of it. First of all, can I say that the Department of Health and all four of us welcome this inquiry. It is an extremely important topic. Over 500,000 people die in England each year. Most of those people die of some form of chronic illness, it may be cancer, it might be heart failure, lung disease, Alzheimer's, a whole range of different diseases, and most people die in old age. That may sound a very obvious comment to make but it has not always been the case. In fact, over 80% of deaths occur in people over the age of 65, and I think almost two-thirds occur in people over the age of 75. There have also been major changes in society over the past 20 or 30 years, particularly with more elderly people living alone and fewer living with extended families. I think it is important to stress that nowadays most people die in hospital, with around 20% dying at home, and around 20% dying either in a nursing home or care home. On top of that, there are some hospices, which are an important component, particularly for cancer patients, where about 18% of cancer patients die in hospices but overall it is about only 4% who die in hospices. This is a topic which is a very high priority for Government. We all want to ensure that there is high-quality care for all patients, including their families. What I want to do, very briefly, is differentiate between specialist palliative care services and general palliative care services, those are services provided, for example, by general practitioners, district nurses, care home staff and a lot of staff in hospitals as well. On specialist palliative care services, we have made major progress in the United Kingdom over the last 30 years, especially for patients with cancer. This whole enterprise has been led by the voluntary sector and we have now a network of specialist palliative care services which covers the whole country, those are hospices, they are home care teams and hospital teams. The Government recognises that the voluntary sector has carried too much of the burden, particularly financially, and that was the reason why in the Cancer Plan which was published in 2000 a commitment was made that £50 million would be put into specialist palliative care services. By 2002 there were concerns that money was not getting through. At that point, ministers established a National Partnership Group of Palliative Care. That is a group which brings together the voluntary sector, the NHS and the Department of Health. That group recommended that there should be a central budget for this £50 million, and we are confident now that money is getting through. The National Partnership Group is focusing now on other long-term issues, because there are still a number of major challenges, which obviously you may wish to explore.

  Q3  Chairman: What do you see are those challenges, could you itemise three or four of the main, key points?

  Professor Richards: For specialist palliative care, I think there are the funding issues, there are the needs of known cancer patients, how best we balance service provision across the country and ensure that it matches the need of patients, and there are issues to do with the specialist workforce, which we acknowledge is too small. Equally, for general palliative care there are issues also. Most patients spend a lot of their life at home, particularly in the last year of life, or in a care home. The problem there is, very often, that the staff who are looking after them may not have received any training in palliative care. I think that the particular challenges there relate to skilling up staff, working in all sectors, whether that is in hospitals, in the community or in care homes, making sure that we do provide optimal symptom control and psychological and social support, making sure that we assess patients' needs properly and then that we deliver well co-ordinated care. That is care co-ordinated between both daytime and out of hours services, between the hospital and the community, between health and social care, so that, wherever possible, we can enable patients to live and die in the place of their choice, which for many is at home, if that is possible. We have set in place a range of initiatives to tackle these issues, which we have set out in the memorandum. They include the guidance which has been published just this week by the National Institute for Clinical Excellence, the Older People's National Service Framework, which emphasises particularly the need for single assessment processes, the whole emphasis within the Department of Health and the NHS on chronic care management. We have been providing training to district nurses in palliative care over the past three years. We have announced recently that there will be a new End of Life Care initiative, and there is £12 million funding over the next three years for that, which really is aimed at skilling up staff working in the community and general practices and in care homes and hospitals, using validated tools for that, the Gold Standards Framework in the Liverpool Care Pathway.

  Q4  Chairman: I would like to bring in some of your colleagues on the same questions, of which helpfully you have painted a broad picture, and you have identified also what you see to be the key areas of challenge. Do any of your colleagues want to add to that, or differ, or emphasise different areas of which perhaps we need to be aware, from your own point of view?

  Professor Tanner: Can I speak briefly to the paediatric and young people's issues, because there are differences, which I can outline briefly. Firstly, a relatively smaller number, about one in 1,000 children, have a life-limiting condition, of whom perhaps 10% die each year, say, 1,100 children per year. The difference from the adult disease spectrum is that only 40% of those would be cancer, perhaps 20% due to congenital heart disease and its sequelae, and the rest a very heterogeneous group of disorders, mainly neurological and developmental, of course.

  Q5  Chairman: In terms of a comparison with adults, what is the proportion who would die at home, is it smaller than the 20% mentioned by Professor Richards?

  Professor Tanner: We have figures for deaths at home for young children, people with cancer, and it is higher. That does require, of course, a great deal of support at home, but perhaps that issue of dying at home, care at home, is one we might develop in further conversation, because it is very important, as you say. We are facing a changing situation. For example, a condition like cystic fibrosis used to be a paediatric terminal care problem, now the majority of cases of cystic fibrosis stay into adult life and so there is a changed need. The same is true, to some extent, of Duchenne muscular dystrophy. Then we have new problems, like AIDS, which appear and then, we hope, regress as retroviral treatment becomes effective, so changing provision. Another point I would like to emphasise is that for some of these children we are talking about a requirement for care for many years, and clearly there is a continuum between general care, respite, palliative care and terminal care. We would hope that the ethos of palliative care, ie placing the patient at the centre, holistic care for a patient, family care, multidisciplinary care, should pervade all childcare services and thus there was more of a continuum, I would say, between care and palliative care in children's services. Different models of care have evolved and, by and large, I think, children and young people tend to stay under the care of their treating clinician, with the input of multidisciplinary teams. We note with pleasure the growth in community, nurse-led teams providing specialist palliative care, and we have now a small but increasing number of specialists in paediatric palliative care, whose role we may discuss further. Care is delivered in many settings—home, school, hospice and other respite services—and we appreciate greatly, echoing Mike's comment, the positive contribution of the voluntary sector. We feel that an ideal service is one which brings all of these players together, delivering individualised care packages, formalising standards and quality assurance, so important. You asked for challenges and I think I would enumerate these: firstly, the workforce across all specialties; related to that, training; thirdly, integration of agencies and care providers; and, finally, commissioning.

  Q6  Chairman: Thank you. Professor Richards, can I pick up your comment on the number of people who die at home. I had the impression that during my lifetime we had gone full circle, to some extent, from the 1950s, when I recall, as a child, what I thought was a much more open view of death, and certainly you saw more people, when I was a child, dying at home, that was my experience. Then we moved to a much more clinical, hospitalised approach to death, and I have got the impression, anecdotally, that perhaps we are moving back the other way, but the figures would appear to suggest otherwise. How do you view it?

  Professor Richards: I think, if one takes a whole century look at it, a century ago probably 90% of people died at home. By the middle of the last century it may have been down to about half of all people dying at home, and more recently it is between 20 and 25%. I think quite a major factor here is the ageing of the population and the changes in society, with more people living alone and fewer people living with extended families. I think that has a very major impact on it.

  Q7  Chairman: Presumably, that is the reason why there are more children dying at home, because they are being brought up by their families, the family unit. Would that be a factor?

  Professor Tanner: Yes. Just to give you the figures, this is 1995-99, children and young people dying of cancer in the 0-15 age range, hospital 43%, home 52%, hospice 3%. In the 16-24 age band the figures are hospital 58%, home 30% and hospice 9%.

  Q8  Chairman: Coming back to the trends again, we have been told that around 56% of people express a personal wish to die at home, and yet we have only 20% actually doing so. What are we doing to address the fact that repeatedly we are denying people what they want to do?

  Professor Richards: What we are doing is looking at the range of services that people need to enable them to spend more time at home or to die at home, if that is what they choose. That includes medical services, GP services, in particular, also it includes nursing services, the district nursing services and social services. Getting all of those integrated properly, I think, is the key element, also making sure that they are available 24 hours a day.

  Q9  Chairman: We have all seen these improvements. I think it is commendable that at a local level we can see the teams working to enable people to die at home, but the progress which has been made in developing that service within the community does not appear to be reflected in the figures of people actually dying at home. Would you accept that?

  Professor Richards: I would accept that.

  Q10  Chairman: Then what is the reason for the difference?

  Professor Richards: I think many of our initiatives, particularly related to the general aspects of palliative care, are only just getting underway. The Chronic Care Management initiatives, the End of Life Care initiatives, those are new initiatives and they have not yet got them sufficiently far underway to see any impact of them in practice. We hope that, through those, we will skill up the necessary workforce so that they can do that better.

  Q11  Chairman: What are your thoughts on ways in which we can make it more socially acceptable perhaps to talk about the issue of dying and dying at home? It is not something as a Committee we have talked about, it is not something that as politicians we talk about, yet we all face that, either with our families or personally, at some point. Why do we not talk more about it? Is it not possible perhaps to influence an improvement on these trends by discussing more publicly the process and the positives that might be involved?

  Professor Richards: I agree with you absolutely.

  Q12  Chairman: Then how do we do it?

  Professor Richards: That is one of the reasons why we are working with the inquiry, in terms of raising the profile of this area, one of the reasons why I welcome the campaign that is being run by Marie Curie Cancer Care at the moment, again focusing very much on how we can raise awareness of this whole issue and focus the public's attention on it.

  Ms Hawkett: One of the initiatives that we are doing is training district nurses in the principles and practice of palliative care. I think, again, that raises awareness and also enables nurses working in the community to feel more comfortable around people who are in crisis and dying and to be able to talk with the family and carers about that. That general initiative, I think, has been very successful in skilling general nurses and enabling them to communicate more effectively with one another and other specialist teams and with families.

  Q13  Chairman: It has been drawn to our attention that the End of Life initiative expresses the wish that all patients should be able to choose to die at home. Is this realistic, and, if it is, how can it be achieved?

  Professor Richards: I think the End of Life Care initiative is a very good starting-point. As I have said, it is aimed mainly at skilling up the generalist staff then spreading good practice. I think we know a lot more about how to spread good practice within the NHS now than we did only three or four years ago, through the work of organisations like the Modernisation Agency and that is what the focus will be in order to raise the proportion who can die at home. Having said that, I think this is only a start.

  Q14  Mr Jones: We have been told that, because in the Delayed Discharges Bill those who are having palliative care are excluded, the exclusion can work to the disadvantage of these patients and effectively it denies the patients the choices they might wish to make. Would you like to comment on that?

  Professor Richards: The Delayed Discharges Bill applies at present only to hospitals, not to hospices. This is an issue which has been raised within the National Partnership Group on Palliative Care, which I chair. The organisation Help the Hospices is undertaking a detailed survey now of a small number of hospices to assess what the size of the problem is, and if we find it is a big problem then obviously we can make the case for changing the regulations so that they apply to hospices. It is a matter of being able to change the regulations, but first of all I think we need to get the evidence of what impact this is having.

  Q15  Mr Jones: What sort of timescale would it take you to get that evidence? Since we are doing this report now, we would like to comment on this possibly.

  Professor Richards: We are expecting it within the next two to three months, so if we can get back any information from that, or Help the Hospices can, I am sure we will be able to provide that information to you. That work has only just begun.

  Q16  Mr Burns: You have just said that you are considering, and presumably out to consultation on, whether to extend the Delayed Discharges Act to hospices, and that an announcement will be made shortly. In those considerations, have you borne in mind also that when the Government brought in the Delayed Discharges Act of course it came in, due to the House of Lords, nine months later than the Government had hoped and they made available, I think it was, £100 million over three years to pay social services in advance to offset the effect of the fines, you know, robbing Peter to pay Paul? If it were decided to amend the rules to extend the coverage to hospices, would you anticipate, have you discussed, making similar, proportionate amounts of funding available to offset the fines which might be caused?

  Professor Richards: We have not got that far, frankly, with the decision-making, because I think the first step is to assess what the size of the problem is. If we can get a clear idea of the size of the problem we will take that back to ministers and a decision will be made about whether the regulations need to be changed.

  Q17  Mr Burns: When would you anticipate an announcement being made, roughly?

  Professor Richards: I cannot give you an exact date for the announcement. What I can say is that Help the Hospices are doing that piece of work and we anticipate that piece of work will be done over the next two to three months. After that, obviously, we will make recommendations to ministers as soon as we can.

  Q18  Mr Jones: How many patients each year, once their symptoms are dealt with, cannot go home but they are not dying imminently? Do you have any sort of figure for that?

  Professor Richards: I do not think I have a figure for that. Certainly, from my knowledge of cancer patients, that can be a problem, particularly when people have got several months of life ahead of them, particularly patients with secondaries in the bone, or patients with brain tumours, and those patients can need a lot of support over the final months of their life.

  Q19  Mr Jones: Where do these patients go, generally, do they go to care homes?

  Professor Richards: Some will go to care homes, there is a limited number of hospices which take patients over that sort of time, and some of them remain in hospital, which is not necessarily optimal.


 
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