UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 454-i
House of COMMONS
MINUTES OF EVIDENCE
TAKEN BEFORE
HEALTH COMMITTEE
palliative care
Thursday 25 March 2004
PROFESSOR MIKE RICHARDS, PROFESSOR STUART TANNER, MRS JANE SCOTT
and MS SUE HAWKETT
Evidence heard in Public Questions 1 - 91
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Oral Evidence
Taken before the Health Committee
on Thursday 25 March 2004
Members present
Mr David Hinchliffe, in the Chair
Mr David Amess
John Austin
Mr Keith Bradley
Mr Simon Burns
Mr Paul Burstow
Jim Dowd
Mr Jon Owen Jones
Siobhain McDonagh
Dr Doug Naysmith
________________
Memorandum submitted by Department of Health
Examination of Witnesses
Witnesses: Professor Mike Richards, National Director for Cancer, Professor Stuart Tanner, Medical Adviser, Child Health Services, Mrs Jane Scott, Team Leader, Child Health Services, and Ms Sue Hawkett, Team Leader, Supportive and Palliative Care, Department of Health, examined.
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 per cent 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 per cent dying at home, and around 20 per cent 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 per cent of cancer patients die in hospices but overall it is about only four per cent 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 with that as well. 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 ten per cent die each year, say, 1,100 children per year. The difference from the adult disease spectrum is that only 40 per cent of those would be cancer, perhaps 20 per cent 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 per cent mentioned by Professor Richards?
Professor Tanner: We have figures for deaths at home for young children, young 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, i.e. 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 commission, 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 per cent 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 per cent. 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 1995-1999, children and young people dying of cancer in the 0-15 age range, hospital 43 per cent, home 52 per cent, hospice three per cent. In the 16-24 age band the figures are hospital 58 per cent, home 30 per cent and hospice nine per cent.
Q8 Chairman: Coming back to the trends again, we have been told that around 56 per cent of people express a personal wish to die at home, and yet we have only 20 per cent 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 smaller 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 optimum.
Q20 Mr Jones: How do these outcomes reflect the wishes of the patients themselves? Where do they want to go?
Professor Richards: That is a very individual matter, obviously, and in some cases, if they have established a very good relationship with the staff in a hospital, that may be the place where they choose to stay because that maybe is where they feel most comfortable, but that will vary. Equally, I think some can be managed then in care homes, provided that the care home staff have had adequate training in this area, and that is something that we know needs more work and that is part of what this End of Life Care initiative is about.
Q21 Mr Jones: Obviously, it is an individual choice, but my question is, on balance, or generally, are these individual choices, whether to hospitals, hospices or care homes, being met, or are the patients going to where the system finds it most convenient to put them, irrespective of what their choices are?
Professor Richards: As I have said, I cannot quantify it for you, but I am quite sure that there are some people who are not being cared for where they would choose to be cared for and who could be if we could skill up the staff in those other areas to be able to look after them.
Q22 Mr Jones: Do you think it would be desirable to be able to quantify this, that it would be a reasonable measure of satisfaction and outcome if we were asking people what they wanted and making a note of it, even if we could not provide it?
Professor Richards: One of the things that we are working on is a tool which measures people's preferred place of care, and there is quite a lot of work being done on this, for example, in Lancashire and Cumbria and by others as well. That is a tool which helps clinicians to discuss with patients what they would most like, in terms of their care over their final weeks and months. Equally, this is something which is a central part of the Evercare programme which is going on in the community, where they are training up advanced practice nurses. One of the elements of training is about advance care planning and enabling the nurses to seek the views of patients in a way which is sensitive to the patients' needs and so that we can get those answers. I think we will be much better placed, when we have got that tool to help us, to measure where people really want to spend their time.
Q23 Mr Jones: The next question I am meant to ask you is how the relatives feel about this, but obviously you do not know how the patients feel about this so presumably you do not know how the relatives feel about it either?
Professor Richards: Certainly I cannot quantify it. I know that a lot of patients, and I think the surveys which have been done show that there are a lot of people who would like to be able to die at home if they could be supported adequately, and that is why we are working hard to provide that support.
Q24 John Austin: Can I go back to something you said earlier about district nurses and the problems there, because one of your professor colleagues from Sheffield, in written evidence, said GPs rarely provide the early reference to palliative care that is beneficial to patients. The District Nursing Association, in their evidence to us, pointed out that most district nurses are trained or have some degree of training in palliative care but that GPs generally do not. Do you think it would be advisable if GPs generally did have training in palliative care?
Professor Richards: I think it would be beneficial for all health and social care staff to have better training in palliative care. In terms of district nurses, of course, there has been a major change in the number who have had training in this area over the past three years, as part of the training programmes which are just coming to fruition now, which were part of the Cancer Plan, and we had a £6 million investment in that area, and we know that those have proved to be very effective. In terms of GPs, yes, again, I think it needs to be part of their continuing professional development. The number of patients which GPs look after currently who are dying at home is really very small, in any one year. GPs do see this as an important part of their work and there is research evidence to indicate that, but obviously it is only one small part of all that a GP does.
Q25 John Austin: Very often they would be the key gatekeeper to early reference to palliative care, would they?
Professor Richards: I think even that is changing. As we move into a situation where more people undergo proper assessment, and that assessment can be started by nursing staff or social care staff, yes, there is a medical aspect to that assessment but it does not then have to be the GP necessarily who is the gatekeeper, in terms of referral to specialist palliative care. Certainly for cancer patients, of course a lot of the referrals come from the hospital specialist team, where often it is the cancer team in the hospital which will engage the hospital specialist palliative care team and the specialist palliative care team in a hospital will engage the community teams or the hospices.
Q26 Mr Burstow: I want to come back to one of the issues which Professor Tanner mentioned earlier on as one of the challenges, about commissioning, because I think it links up with what we have just been discussing. I wonder, Professor, if you might be able to amplify and say in what way you see commissioning as a challenge? For example, is it an area where really there would be more merit in joint commissioning between health and social care services, particularly in respect of the End of Life initiatives we have just been hearing about? Are there any particular initiatives currently in the pipeline or being rolled out which would have an impact upon commissioning intentions, within both the NHS and social services departments, around the development of palliative services?
Professor Tanner: I think that the commissioning arrangements have the same intrinsic problems as other tertiary paediatric specialties, but the numbers of cases in any PCT are very small and so arrangements such as joint commissioning, for example by NORCOM in Derbyshire, work very well. The links between health, social services and education and other agencies are very much at the core of the Green Paper 'Every Child Matters' and I would anticipate that, as the children's Pathfinder sites are evaluated, and there are approximately 35 of those, we would look to see how that is working in practice.
Q27 Mr Burstow: Just on that point about the Pathfinders, we know all of them are covering a whole range of health and social care, and some of them are very specific, do you think there will be sufficient learning coming out of those two to draw any conclusions around this area?
Professor Tanner: It may not achieve statistical significance, but I think some of their work models will be valuable.
Q28 Mr Burstow: Can I move on to the adult services. I think it will be useful to hear from the commissioning point of view?
Professor Richards: I think there are several elements to commissioning. The first key set is assessing the needs of the population, then you need to plan the services, then you need to do the detailed contracting for services. The needs assessment, I think we have moved on considerably there, again, in many ways, thanks to work which has been done by the National Council for Hospices in developing a needs assessment tool, and we are working at the level of the network. Typically, a network covers a population of around one to two million people. That may have five or six Primary Care Trusts, a number of hospitals, maybe five or six hospices in that patch, and we are getting them to work together. We have been working closely on this with the National Council for Hospices to skill up those networks in looking at the needs of their populations and planning services, and this was one of the things which came about through the £50 million which was allocated. Because people had to apply for that funding, it did get them together to think about their commissioning in a much more progressive way.
Q29 Mr Burstow: The network you have just described did not mention social care at all. How are they being built into those networks?
Professor Richards: I think that is a weakness at the moment that we need to build on, I will acknowledge that. There is the freedom at the local level to pool budgets between health and social care and we know that is happening in some places. I am told that there are 255 different projects on that which have been reported to the Department of Health, with the pooled budget, amounting in total to that £2.5 billion. In the cancer world from which I have come, I do not think we have done enough to engage with social care at the moment and I think our networks really do need to extend to incorporate social care, particularly when it comes to palliative care.
Q30 Dr Naysmith: Talking about the commissioning process, how are you going to ensure that funding is distributed on the basis of need and not simply just geographically, on the basis of a head count?
Professor Richards: The lesson of the needs assessment planning tool is that it takes into account not just the population size but also, for example, in relation to cancer, the number of cancer deaths that are occurring, the age and the structure of the population. It takes a number of different factors into account, it is not simply based just on population.
Q31 Dr Naysmith: Surely, provision, if it is based on voluntary provision, is going to be much more available in affluent areas than it is in less affluent areas. Is that a factor you are prepared to take account of in deciding where the extra money is going to go?
Professor Richards: Historically, I think that has been the case. That is where hospices have tended to be established. This new model of working within networks is about saying, "Let's assess the needs of the whole population, for hospice care, for home care, for care in hospitals, for care in care homes, all of those aspects, so that we can plan for the population as a whole."
Q32 Dr Naysmith: It is going to depend on how big the networks are and whether they are comprehensive enough, is that right? If they are too big the same thing will happen in lots of areas.
Professor Richards: I think you are right. At the moment we have 34 networks covering the country and, as I said, serving populations of one to two million. Those are valuable for a lot of purposes in planning across the whole sector. For example, that network is likely to have one major cancer centre in it, but there are other issues which need more locally-based planning, and that is happening as well where the PCTs and the local hospice particularly in the locality are looking at what they need in that specific locality.
Q33 Mr Bradley: Just picking up on the children's services side of the cancer network, as you say, smaller numbers can often cover a much wider area outside of one particular network. Are the mechanisms in place to ensure there is co-ordination of services to a children's hospice from that much wider population base that would feed into it, because one of the problems seems to be the certainty of funding from that wider population base that they are looking at and currently serve?
Professor Tanner: I think that, children's cancer, there has been a very pleasing growth of paediatric oncology outreach nurses, some funded, of course, by Macmillan and Marie Curie, others funded from the NHS, they have led the way I think. I note in her submission Janet Vickers draws attention to the discrepancy between the service for cancer and the service for some other conditions. They would provide the bridge to the hospital as well. I do not know whether my colleague would like to say anything more about that aspect of care.
Mrs Scott: I think one of the issues, you are quite right, is that obviously a children's hospice covers potentially a much wider area, and in fact often they are not attracting so many clients from the local catchment, they may be from much further away. The very, very key thing is for the PCTs to work in consortia, and obviously, with the advent of Children's Trusts, where there will be a pooling of budgets, again, for them to work in consortia, so we are looking at wider areas, assessing the need and looking at the potential volumes. As Professor Tanner was saying, these children, we know about them for quite a long time in advance, they could be diagnosed at birth but not die until their teens, so by looking at the numbers we can begin to evolve such a strategy in our planning and our use. It has to be said, it is an issue, and PCTs and the new Children's Trusts do need to work through how they work together more efficiently to plan and deliver those services.
Q34 Mr Bradley: What mechanisms are you putting in place to try to achieve that, because relating it to this Trust, again, those are small areas and PCTs may work in an even bigger strategic health authority? I have got a children's hospice in my area which covers the whole of the North West. Are the mechanisms in place to work together collectively and across that much broader area?
Mrs Scott: I think the mechanisms are developing, and obviously PCTs are quite new organisations, a lot of them, and they have had a steep learning curve in commissioning generally. What we hope to do, through the Green Paper and the National Service Framework, is promote this sort of consortia coming together in particular areas, and so I hope those two documents will be able to be drawn on by PCTs and the new Children's Trusts. I think the key is around needs assessment and working with your neighbouring PCT and tertiary centres and local hospitals. Also very, very key, and I cannot stress it enough, is the local authority, because often these children are disabled and known to social services and education as children with special needs, maybe before they are seen as children with palliative care needs. Again, it is that planning and that working together which I think is essential.
Q35 Mr Burstow: In the memorandum which you submitted you acknowledge that probably the greatest inequity which exists at the moment, in respect of palliative care, is its very considerable focus around cancer, really to the exclusion of other life-threatening conditions. What plans do you have around addressing that imbalance? Taking that on a stage further to those conditions which are not life-threatening but are lifelong or degenerative, what plans are there to expand the concept of palliative care perhaps to include them? In that respect, does the NSF for long-term medical conditions address palliative care, or is that being considered actively in that process? If all of these unmet needs are to be met, what assessment have you made of the resource implications of doing so?
Professor Richards: If I start off on that one and then maybe, on the lifelong and degenerative cases, my colleagues will take it on from there. I think, cancer versus non-cancer, we do know that people dying of heart failure, chronic lung disease and other conditions have a multitude of different symptoms, which actually are broadly quite similar to those experienced by cancer patients. Certainly we believe they are not always met and the research evidence supports that. I think one of the key differences though is the trajectories that these patients have. In very simplistic terms, usually cancer patients are relatively well for quite a long time and the time when they need special care is relatively short. For other patients it may be a slower decline with dips and rises in-between and so the services they may need may not be identical to those for cancer, but that they need care I think there is no doubt at all. I think there are a number of ways in which we can improve the care. The first is, I say it again, working alongside the generalists and skilling them up and making sure that, whether that is GPs, care of the elderly staff, a whole range of different groups, chest physicians, cardiologists, etc., they have all got the skills they need. Part of that may be encouraging specialists in palliative care to work alongside those people, perhaps in the hospital setting. I think also the specialists in palliative care in the past have dealt mainly with cancer and a narrow range of other conditions, some neurological diseases, HIV/AIDS, etc., but actually they may not have the skills when it comes to heart failure, lung disease, etc. We may need to get more of those specialists in palliative care working alongside each other so that they can jointly skill each other. Specialists in palliative care can learn about heart failure management and vice versa and the cardiologists, for example, can learn about palliative care. I think that is one model we ought to be doing more of, and, equally, I think the second one is making sure that the totality of health and social care staff are better skilled.
Q36 Mr Burstow: Then on the long-term conditions?
Professor Tanner: Can I comment about particular ones, first of all, and can I come back to cystic fibrosis, which now, as I say, is a real challenge for the adult cystic fibrosis team. At a centre like Manchester, for example, Professor Kevin Webb there reports that approximately seven to ten patients with cystic fibrosis will be dying in their twenties in that large centre, and I think that is mirrored across the country. Their ethos is very much treat actively almost to the last, because care delivered to improve or maintain lung function is also care which is helping symptoms, and many of these patients are buoyed with the hope, sometimes realised, of transplantation. For that particular disease Professor Webb reports that his team, which is multidisciplinary, has the skills to provide support to the last. The situation is a little different, I think, with muscle disorders, for example, where what has made the difference is night-time non-evasive ventilation and there is a particular, different set of skills needed for that. One of the real challenges, I think, for us, and which is being met in different ways in different places, is the transition from childhood to adult care. For many of these youngsters and their families who have been used to a paediatric team, to change to an adult one is a very traumatic process, potentially, so a lot of effort is put into thinking about that process and easing it. I think errors have been made either way. For example, patients were being kept in a paediatric environment for too long when the skills of the adult palliative care specialist were needed.
Q37 Mr Burstow: I want to clarify precisely where the Department is currently, in terms of this thinking about whether or not palliative care as a whole is something which should be applied not just to those who have life-threatening conditions but also to those who may well be spending a large part of their adult life possibly with a neurological condition, where palliative care will have a part to play. Is that something which is being considered actively and worked on?
Professor Richards: Quite definitely, yes, and that is why we asked the National Institute for Clinical Excellence to develop guidelines on Supportive and Palliative Care, because, although that relates specifically to people with cancer, that is recognising that people have physical, psychological, social and spiritual needs throughout their care pathway. We believe that guidance, which was published early this week, will be of great value to areas outside cancer. I think a lot of the principles will be the same. We started by developing it for cancer as part of the Cancer Plan Supportive Care Strategy, but I am sure it will move further on from that, that is a starting-point. Yes, we are committed to care throughout the illness. We do need to define the service models which are going to be best for diseases other than cancer. I think the work that we are undertaking both with the Chronic Care Management programme and the other care pilots and the End of Life Care initiative will teach us a lot about what the care models need to be, the service models. You asked also about resources. The issue there is to what extent resources can be released from the hospital sector to go into other sectors. There was some work, which was done on behalf of Marie Curie Cancer Care, which indicated that at least it was possible that if we could reduce the number of people dying in hospital, and maybe if they had a fortnight in hospital at the end of their life, the amount of money that could be released by shifting that into the community might pay for itself. I think now we need to find out whether that is the case in practice, but I think programmes like the Evercare programme and the Integrated Cancer Care pilots that we are doing will help us to know whether that is a reality.
Q38 Mr Burstow: Over what timescale?
Professor Richards: The Integrated Cancer Care pilots are due to start shortly and are over the next two years. The Evercare pilots, which relate to elderly care more generally outside cancer, are already well underway, and I think the assessment of that is due out by the end of this year.
Ms Hawkett: Those in the Department developing the National Service Framework for long-term conditions are looking actively at the whole area of palliative care for these patients and are taking into consideration the NICE guidance which has just been published to inform their thinking.
Q39 John Austin: Could I raise briefly the issue of renal services. The evidence we have had from the Department of Health is that only one in five of the renal units in the country have support from a palliative care team, and yet in examples where palliative care has been provided there has been an increase in the number of patients choosing either not to start or not to continue with dialysis and exercising a real choice. We are expecting a National Service Framework on renal services at some stage in the near future. What input has there been to that, in terms of end of life care?
Professor Richards: There are a couple of things to say. In our planning of the End of Life Care initiative, the renal team from the Department of Health are engaged fully with us on that. I think the models that we have got already, you mentioned the one in five renal units where there is specialist palliative care involvement, those are models which now we need to build on and say, "Right, how does that work? Let's look at the experience there, let's look at how then we can get more support into renal units, if that is what's working." Equally, I know that there are a number of renal units which have been implementing the Liverpool Care Pathway for the Dying, which again was developed originally for cancer patients but now is being used beyond cancer in a number of different settings, including renal medicine.
Q40 Mr Burstow: Just to come back on the process of skilling up the generalists, which you were describing just now, Professor Richards. It all sounded very good, but it was not very clear precisely what the mechanisms are to ensure that the good aspirations you have outlined actually are translated into practice around the country. Could you say just a little bit more about what the mechanisms are, what the levers are that you are able to pull to enable you to see that rolled out more generally?
Professor Richards: There are two main tools that I mentioned. The Gold Standards Framework, which by the end of the year will be in use anyway in about a thousand practices throughout this country. This is a tool for skilling up whole general practices, not just the GPs, the GP, the practice nurse, other staff working in primary care, to help them identify the patients who have got needs for palliative care, to assess those needs, to communicate amongst themselves, first of all, what those needs are, to plan care and then to make sure that care is delivered. That is one of the tools. The other tool is the Liverpool Care Pathway for the Dying, which really is about the final days of life, and this is a tool which can be used in the hospital setting, in the care home setting, really in any setting, to make sure that staff, let us say, working in care homes or staff working on hospital wards really know what they should be doing when a patient is identified as dying. How we are going to spread that, the programme that we have got we will fund at the level of the strategic health authority and we will be looking for champions within each strategic health authority. We will be looking for nurse leaders, for specialist palliative care leaders, for general practitioners leaders and also for those with experience in modernisation. We will be defining the criteria for their use of the funding. They will then produce plans and, in very much the same way as we had for the £50 million for specialist palliative care, we will assess those plans, and as long as those plans meet the criteria they will get the funding to do this over the next three years. Over that time we reckon that there is a substantial number of hospitals and care homes and general practices which will benefit from this. I do not say that this three-year funding will end that programme, I think it will make a major start on that, and we will be learning as we go along and making sure the messages are spread across the country.
Q41 Dr Naysmith: Reading the literature in this area, there seems to be an indication that there is a lack of uptake of services by black and minority ethnic users. Is that something with which you agree?
Professor Richards: Yes, at least in relation to specialist palliative care services, I believe that has been the case, probably for a variety of reasons. Historically, some of the hospices have been seen as being Christian foundations, although all of them will accept others.
Q42 Dr Naysmith: I was going to go on and ask you about that, because lack of uptake also can be lack of access and lack of encouragement to take up, if you see what I mean. Given the way the area has grown up, I wonder what we can do to make sure, obviously that institutions keep their character, and so on, but that they become more open and more widely accessible?
Professor Richards: I am sure all hospices are willing to provide access on the basis of need rather than any other criteria. We have some extremely good examples of where specialist palliative care services and hospices have worked with the local community to engage with faith leaders, to engage with local radio, whatever it may be, and in response to that they have seen the numbers of people from those minority ethnic groups rise to what one would expect in relation to the local population. I think strong local action can make a very big difference.
Q43 Dr Naysmith: Ms Hawkett was looking very interested in this particular area, maybe it is time to see if she wants to answer a question or two. Is there actually work going on in this area that you know of, positively to try to encourage change?
Ms Hawkett: I think one of the most positive recent things is the funding which NOF (New Opportunities Fund) has invested in this area. They are running two programmes. One is the Living with Cancer programme, which has invested over £21 million to provide home care support for carers and information for black and ethnic minority groups. That programme will be finishing next year, but there are 90 projects running across the country and many of those are associated with hospices.
Q44 Dr Naysmith: You are beginning to get some feedback on what works and what does not work?
Ms Hawkett: Yes. I think one of the early findings from these projects is the need for them to engage with local community leaders, and where that has been done and done successfully there is greater access to these services.
Q45 Dr Naysmith: The same sort of lack of representation applies to users with complex needs, and I am thinking here of some of the mental health problems and dementia, and that sort of thing. Do you think it is likely that they will be better served in the future, that there will be more attempt to encourage them to use the services?
Professor Richards: I think, in terms of that sort of area, the key first step is the single assessment process, making sure that we have the assessment from both a health perspective, often carried out by a nurse, and a social care perspective as well, and now there are new timescales and deadlines by which those have to be implemented. That is the way in which we will assess need. Then, in terms of what services those patients will want, I think we are going to be in a much better position to say "Now we know the need, what services can meet those needs?"
Q46 Dr Naysmith: Probably, at the moment, there are unmet needs, and even if we identify them we will need more resources in order to meet them?
Professor Richards: I am quite sure that there are unmet needs.
Q47 Mr Bradley: Can I go back briefly to something Professor Tanner has mentioned already, the boundaries between children's and adult services, particularly in hospices, where we have had evidence of difficulties, of cut-off points, whether it be at 16 or 18, and to remove someone at any particular point who is already within a hospice setting, obviously, at the end of their life, can be very difficult, if not cruel. Do you have any further thought on that? You started to say you were thinking about this problem, about those boundaries and demarcations in age, which often for children are not appropriate because of the conditions from which they may be suffering?
Professor Tanner: I am afraid I do not have data on the transfer of children from a children's hospice to an adult one. I will ask Jane, in a moment, if she has. Within the community paediatric teams, palliative teams, and hospital services, however, there is a great deal of emphasis on providing a smooth transfer and a very flexible approach to age. Our age, as it were, is up to 16, sensibly, but there are many patients, particularly those with severe cognitive delay, who may continue to be under the care of a family paediatric team for some time. Jane, do you have any data on the hospices?
Mrs Scott: I do not have any data on the transfer from a children's to an adult hospice. I think that 16 was mentioned, 19 is another figure, because 19, obviously, is the transfer within the local authority. What we are trying to encourage is, and certainly the work with children, young people and families, in getting together an evidence base for the National Service Framework, has suggested that is a very important area, that they would like to choose at what age they transfer, within some sort of limit. The other issue is, of course, that often a young person might be 18 and still you cannot predict whether they will still be with us when they are 30 or whether they have got only a few months to live, so there has to be a decision taken at some point. The other thing I would like to stress here, and which I think is another difference with children and young people, is that there is an age at which young people want to make their decision themselves, and whatever their cognitive ability that is the case. There is an issue then, obviously, where the professionals have to be quite skilled at dealing with parents, who may not want the young person to have the decision, and that is another dynamic which comes in, in a big way. I hope that it is done in an individual way, with obviously some boundaries because of resource allocation. Certainly, as Professor Tanner said, you have young people within paediatric units who have chosen to stay there for their operation, or whatever, because they know that facility, they know the staff, etc., particularly around congenital cardiac conditions. A lot of that has been going on following the review we did a few years ago, back in 2001, to look at how we transfer young people far more smoothly, rather than you get to a birthday and have a cut-off, that you begin with them and their parents making that decision, they could be 14, 15, that could be right for them. Then moving through, often to different hospitals, so Great Ormond Street and the Middlesex, for example, where the same cardiac liaison nurse who is at Great Ormond Street then goes and does the clinic at the Middlesex, so that they recognise the same face. That is just one model of good practice which could be transferred elsewhere.
Q48 Mr Bradley: You would make that quite clear that is the right approach, because quite often, in all aspects of care, we hit these sorts of rigid boundaries, and that sensible, flexible approach is not applied necessarily from the Department of Health? You would make it quite clear that there should be that flexibility and individual assessment of particular needs?
Mrs Scott: What we would say is that is best practice.
Mr Bradley: That is a slightly different case.
Q49 John Austin: Can I raise the general issue of children's hospices. For a variety of reasons, the number of places required in children's hospices will be many fewer than for adults, and, as Keith Bradley was saying earlier, his children's hospice covers the whole of the North West. Two years ago I was at a children's hospice, Demelza, in Kent, which serves the whole of Kent, which is a pretty large area, also it takes children from south-east London, but then it did not appear to have any contracts with any PCT. Looking at the figures, it does appear that the proportion of funding which children's hospices receive from the Department compared with adult hospices is very much lower. Would you like to make some comment about the need for children's hospices and the relative disparity in public funding which is going into children's hospices?
Mrs Scott: Children's hospices are part of a whole pathway of care for a child and young person. Often they are used in a very different way from adult hospices, in the sense that often the child will access the hospice for respite care through a long number of years, also there may be periods of therapy provided there which maybe is not provided locally, sometimes it is hydrotherapy, things like that, they may access there as well. I think increasingly hospices see themselves as centres of excellence, where other services can go to receive training and education and support. It is not necessarily about bed days. We have a number of hospices which do not have any beds, it is a virtual reality kind of care, and I think that must be stressed. Again, I think it is about giving parents choice. Sometimes, particularly when the children are younger, parents do not want the children to be away from them, and therefore hospices enable parents, and sometimes siblings, to stay as well. Often, if a child is very, very poorly, they need to be in a hospital type environment where they will receive end of life care, because, as Professor Tanner was saying, quite often it is up until the end that you are keeping on treatment, or often the family makes the decision for the child to die at home. I think there is a very key need for hospice development, but I think it has to be part of a needs assessment for a number of areas to assess then what that hospice should provide. Often there are services being provided mainstream in the NHS and by the hospice, and I know a lot of work has gone on recently to make sure that those services work together, in an integrated way, rather than running in parallel. Certainly I think dial-a-nurse teams and again the NOF funding into children's services has helped quite significantly.
Q50 John Austin: You have explained why a hospice place may be less appropriate in the case of children than for adults and, as I said earlier, there is a variety of reasons why a hospice may not be appropriate. Where it is deemed appropriate and where it is accepting children as patients either on a respite basis or for residential care, why is there such a disparity in funding compared with the adult hospice movement?
Mrs Scott: I think largely it is to do with numbers, in terms of how they started, how they grew up, and that individual organisations, which then were health authorities, of course, the health authority on the patch which was the patch where the hospice stood felt rightly that they were providing input into a hospice where maybe not many of their resident population were. I think there are a lot of historical things that need to be unknitted. The ideal thing is actually working with a group of PCTs, Children's Trusts, whatever we have in the future, obviously, to determine what is going to happen across the boundary. Obviously, some PCTs would prefer to pay the cost per case, so when they have a child, and some of these children we are talking about, in both workforce and equipment terms, are very, very resource heavy for that one PCT, they would prefer to buy a number of bed days. I quite understand where the hospices come from, that is not very satisfactory when you want to maintain and sustain a hospice over a period of time. We are looking at ways, obviously, within the New Opportunities Fund as well, whereby they can begin to work out a package of more effective commissioning.
Q51 John Austin: It has been suggested that, the fact that they do not receive necessarily statutory funding and the way in which the services are funded, this has led to fragmentation, lack of continuity of care and a lack of planning. Is not this an area which does require some serious attention in order to co-ordinate the development of services for children?
Mrs Scott: I cannot stress strongly enough that hospices need to be seen as part of a package of care across the board and they are one element of a child's care. If we think about the place where a child and a young person will receive the majority of their healthcare, it is often in school, where school nurse assistants, education assistants, actually will perform tasks around gastrostomy feeding, etc., etc., with the child or young person. I do not think we should forget that. In terms of fragmentation, I think a lot of work has been going on locally, certainly since early 2000, around looking at how we can have more integrated pathways of care for children, which include hospices, but it is a local decision how Primary Care Trusts spend the funding which has been allocated to them in their basic budget.
Q52 John Austin: Given that children's hospices will not be provided locally, immediately locally, they will serve a much wider area, is there a role for the strategic health authority, and, if not, whose responsibility is it to see that there is a proper provision in the area?
Mrs Scott: The role of the strategic health authority obviously is to performance-manage its Primary Care Trusts and keep a strategic overview of planning services, so I think, yes, they do have a role. Obviously they will be supported by work coming out from the Department, such as in 'Every Child Matters', where we talk very clearly about parents needing to be supported and about the pooling of budgets and getting an integrated service. Also, of course, the work we have published already within the emerging findings and the National Service Framework and the National Service Framework Hospital Standard, we are expecting the National Service Framework, the rest of it, to be published later this year, and I hope the strategic health authorities will base the implementation of integrated services on these two documents.
Q53 Mr Bradley: Just so that I can be absolutely clear, accepting, as we have, that children's hospices cover a much wider area, accepting that they are only part of the continuing care, could you write to me perhaps and use just my region as an example, the North West, and say who is responsible for co-ordinating all those elements? So that I am clear who and which organisations are linking together to come up with a plan, for example, as I say, for the North West, to ensure that each of those elements is co-ordinated right from the local level but into that much wider area? I do not get a sense, in my region, that co-ordination is going on. It may be, between one or two PCTs, it may be within one or two local authorities, but, because children's hospices, for example, take them from such a wide area, who is doing that work actually? Could you write to me on that point?
Mrs Scott: I am sure we will be able to do that. I would stress though that one size does not fit all and what is being done in your area, which may or may not be effective, probably is being done differently in another area, and one of the key things is learning across.
Q54 John Austin: Whatever the provision was, it would still need somebody to do it, to be responsible?
Mrs Scott: What I would not be giving you necessarily is our best practice, it would be what is happening to you locally.
Q55 Mr Bradley: It would be an example and we could judge perhaps whether it was good practice?
Mrs Scott: Yes.
Q56 Jim Dowd: I realise you are not direct service providers yourselves, but I want to look at just how the service is received by many people. The Health Service Commissioner told us and gave us case studies which indicated that the biggest source of complaints she gets in relation to palliative care is a lack of communication, communication between both the care staff, that might be ward-based staff, and, say, Macmillan nurses, between consultants, between families of the patients and the patients themselves. I wonder if you could tell us what view you have on what can be done to improve performance in this area?
Professor Richards: Yes, certainly. The communication issue is one which was given very high prominence in the NICE guidance on Supportive and Palliative Care. There are two aspects. One is communication between the health professional and a patient or a family member and also communication between professionals and the general co-ordination there. Each of those got prominence in the NICE guidance. On face-to-face communication with patients, we recognise this is an extremely important aspect of care, one that patients value highly and one for which, in the past, I do not think either medical or nursing training has prepared us adequately. We do have now extremely good research evidence that training both doctors and nurses in communication skills improves their performance. We are working now with the people who have done the research to develop accredited programmes for communication skills which will be available across the whole country. We have just been through a year of a pilot programme for that, which has been very successful. We are working now with the emerging NHSU, that is the University of the NHS, which is in embryonic form, to roll this out to cover the whole country. The reason that is going to take some time is that we need to train facilitators to run those programmes, but, in essence, what that does is it allows clinicians to come to those programmes with their own particular communication problems. It may be that a doctor or a nurse may say, "I find it difficult to tell a patient that they are dying." If that is the problem then within that programme they can learn how to do that better. I think that is a very important aspect of communication that we are taking forward. Also, in terms of the general co-ordination of care, one of the key aspects there is, first of all, working in teams, and those teams meeting together and discussing patient's problems and discussing the plan for care, and that is happening very much more now than it was even a few years ago. Then obviously between teams you need to make sure there is communication, for example, between a palliative care team in a hospital and the primary care team. Again, the guidance gives specific recommendations on how best that can be done.
Q57 Jim Dowd: How do you address the conflict which may arise between the preference of a patient and that of, say, their carer/families? How does this reflect perhaps, in an earlier question from the Chair, the discrepancy between the numbers who say they want to die at home, although that might be just an idealised view of things, we might all say that many years from what we perceive to be the end, and the less than half who actually manage to achieve that?
Professor Richards: As a commission, one's primary responsibility is to the patient, I think that is very clear, but within palliative care we do try, wherever possible, to support carers and families as well. Very often, where there is no conflict, that is relatively straightforward and the same clinician can be doing that. There are other occasions when there is conflict between the patient and family where it may well be that you need a different member of staff allocated specifically to deal with the carer's needs, and that can work very effectively. Certainly, within the palliative care team for which I was responsible at St Thomas', that was the way we worked it. There is a whole section again in this NICE guidance on family and carer support, and I think we are recognising that it is very important that it goes on during the patient's life and not just in bereavement, although bereavement care obviously is an important aspect of care as well. Often, if you can identify the carers who have needs early enough, you may be able to work with them while the patient is still alive and support them, and many of them will want to give support and care for the family, they may just feel that the burden is too great, but often they can be supported in that, and that is why we have made that a priority too.
Q58 Jim Dowd: On one particular issue, DNRs (do not resuscitate), do you believe there is ever a case for a clinician solely taking that decision without communicating that either to the patient, if they have facility, or to their family and carers?
Professor Richards: I think this is a very difficult one. There are people who are close to death where we know that resuscitation actually is futile, where we will not succeed in resuscitating them, and therefore to attempt to resuscitate is burdensome, frankly. I think, on occasion, that can be reasonable, for that to be the case and therefore not discussing it with the patient. I think, in general, we are becoming much more open in our communication with patients about all aspects of their care and in terms of advance care planning, and that should be part of it, it should be discovering what the patient thinks they will want, although, of course, their minds may change as the disease goes on. Again, it comes back to communication. If we have got staff with the communication skills we can discover then what the patients' wishes for themselves are and we can honour those wishes.
Q59 Mr Burstow: Earlier on you said that not enough had been done yet to engage social services, in terms of commissioning, and so on. One of the concerns I think we have, from evidence we have seen, is the way in which social services provision has changed over time, moving increasingly out of domestic help at home into intensive personal care at home. In the context of palliative care, particularly end of life care at home, is it really a choice to have care at home if there is no domestic support being provided? Is it really a choice when you are faced with the prospect of living in a home which is becoming ever more squalid, as part of the dying process?
Professor Richards: I had said already that I think there are problems in this area. Having said that, the Department of Health has issued guidance requiring councils to give the highest priority to patients who have got life-threatening illnesses. There is also the guidance on continuing care, in terms of who picks up the funding for care towards the end of life, and the Department of Health made very clear that should be based on need, not on a specific time span before death. With the new programmes that we are running, I think, as we identify patients who are not being looked after at home because of those factors, that will actually bring that out into the open and then we will see what more needs to be done, in terms of the practical support that you have itemised. I do not think we have got it right yet but I think, through the various programmes, the Evercare programme, the Integrated Cancer Care pilots, the End of Life Care initiative, we will be able to see where the gaps are and then make further recommendations on what needs to be done.
Q60 Mr Burstow: Particularly in this area, where we are talking about end of life, is it appropriate to have too great a focus on simply providing intensive home care of a personal nature at the expense of providing domestic help?
Professor Richards: We need to meet patients' needs, and if their need is for domestic help I believe that should be met. If that is what is going to enable them to spend their last weeks or days at home then that is what we should be finding a way of providing. As I have said, we have already made this a priority area, but I do not think we have got the right solutions. I think we will identify exactly what needs to be done through these various pilot programmes.
Q61 Mr Burstow: The other thing I want to come on to, Chair, if I may, which relates to that, is what appears to be a continuing confusion about the applicability of continuing care funding arrangements for people who are being provided with services, not just in terms of nursing home settings but also residential care and, for that matter, in their own homes. Are you satisfied that the current arrangements for providing and assessing entitlement to continuing care funding from the NHS are understood by all practitioners responsible for such assessments?
Professor Richards: It is very difficult for me to know whether it is working in every single part of the country. What I can tell you is that all strategic health authorities have reviewed this area, and specifically to do with the eligibility for NHS funding, and have made very clear that should be based on need, not on an anticipated time to death, because, frankly, anticipating the time to death is very unreliable.
Q62 Mr Burstow: Would it be appropriate, therefore, in those assessment methodologies which are being drawn up by the 28 strategic health authorities, for a person to be able to travel from one locality to another in England and find that they would be eligible in one locality but not in another for continuing care?
Professor Richards: I have no evidence that is the case. I cannot say more than that because I have no evidence whatsoever.
Q63 Mr Burstow: Is that because you have not had the occasion to look at and examine that?
Professor Richards: Personally I have not had the occasion to look at and examine that, so I cannot answer that.
Q64 Jim Dowd: We have received a number of submissions from people mentioning recent developments in Canada, principally looking at it more from the point of view of the carer, in those very supportive roles in the terminal stages. I wonder if the Department has looked at that at all and do you have any similar plans for making any assessment of the value of it?
Professor Richards: I have not looked at it in detail. I may say that I am going to Canada in June and I am trying to make arrangements to meet development people in Canada when I go there. I am not yet in a position to report back in detail, but I am aware of what they are doing and I think there are lessons probably that we can learn in both directions.
Q65 Jim Dowd: Is your strategy taking into account the needs of carers and supporters for those terminally ill as well, in the way that the Canadian model is intended to perform? What are you doing in that area to look at the needs of carers?
Professor Richards: As I said a little while ago, in relation to the NICE guidance on Supportive and Palliative Care for cancer patients, we have a specific chapter in that on families and carers and identifying their needs during the care process for the patient and then meeting those needs. As we implement that NICE guidance, we will find to what extent we are not meeting the needs of carers, and I suspect that at the moment we are not meeting them.
Q66 Mr Burns: Can I read to you a statement which was in a written memorandum submitted to us by Dr Keri Thomas, where she said: "Most end of life care will always be provided by generalists - GPs and District Nurses in the Community, ward staff in hospitals and Care Home Staff. We can improve care through improving access to education and training and the use of guidance and frameworks, backed by specialist and social support." Do you agree with those views and do you think that, in order to achieve some national equity, there should be national planning and management of extended training programmes, for example, the extension of distance learning programmes for the Palliative Care Diploma?
Professor Richards: I agree with it wholeheartedly and it is very much along the lines of what I have been saying in terms of our End of Life Care initiative. She has written it down there as a paragraph but it is almost exactly what we are planning to do in this initiative. I agree completely on that. As I have said earlier, we are rolling that out across the whole country.
Q67 John Austin: Some of the hospice providers have suggested to us that the regulatory burden is somewhat heavy. I wonder if you have any comments on that? I understand that, although the National Care Standards Commission currently has responsibility for care homes, when the new arrangements come in stand-alone hospices will come under the new CHAI and CSCI will have responsibility for adult and outreach services generally. There appears to be a possible fragmentation of regulation. I wonder if you have any views on whether there should be a single, seamless arrangement?
Professor Richards: Actually, I hope it is going to work the other way round, because, at the moment, voluntary hospices have been regulated by the National Care Standards Commission, whereas NHS services have been regulated through the old CHAI, if you like. What we are trying to do, by developing the national guidance to which I have been referring, is have guidance on what the service models should look like, whether they are provided by the voluntary sector or by the NHS itself. Those service models are based on best available evidence combined with consensus. From there we will develop the standards and then we will develop an inspection process to see whether services are meeting those standards. We have been working very closely with the new CHAI on this, and that will bring together those two bits of work. We are also aware that the new CHAI is working very closely with the CSCI on social care and they have a Memorandum of Understanding. Having said all that, the new CHAI does not actually get up and running until April 1, so we have been doing a lot of preparatory work with them to try to make sure that the regulatory processes are brought together. Indeed, even with the National Care Standards Commission, the standards they used for inspecting hospices were based on the first draft of the NICE guidance, so I do not think it is going to be too difficult a process to bring all those things in line.
Q68 John Austin: Can I come on to staffing issues, because I think it is quite clear that the Department's evidence acknowledges the serious shortfall in specialist and qualified staff, although your memorandum does show considerable progress in redressing that. Nevertheless, in the evidence that we have had, staffing issues are among the most difficult, and in my own area, in particular, there has been comment about the lack of responsive overnight specialist care and support available. Are you able to identify the particular problems which are faced in inner-city and similarly deprived areas, and what are the implications for those areas and what is the Department doing to address that?
Professor Richards: First of all, if we think about the consultant staff, the specialists in palliative medicine, I think we all acknowledge that we have too few consultants in palliative medicine, and, what is more, yet again, they are not evenly distributed across the country. There are some particular parts of the country, there is an area, effectively, to the west of Birmingham and an area up near Hull and the Yorkshire coast, where there are very few staff, and probably there are other areas as well.
Q69 Dr Naysmith: Could I ask, while you are mentioning consultants, what do you think the figures are, because we have had some discussion about what are the correct figures, and so on?
Professor Richards: May I say about the figures that I would advise you to take the figures from the Association for Palliative Medicine because I think they have the most reliable figures. I will explain why. In the past not all consultants working in hospices have had an NHS contract, a contract with an NHS Trust, therefore they have not been reported to the Department of Health in their workforce surveys. I am hopeful now that we are getting all the consultants to have at least honorary NHS contracts, and therefore that we are counting them in our workforce surveys.
Q70 Dr Naysmith: In a number of areas, it always strikes me that the best way to get the figures is to take what the colleges say is the absolute maximum and then what people are saying is what they have got and what they need and somewhere in the middle is the correct minimum. Are you disputing that?
Professor Richards: No, I am not. I am saying that, in terms of what we have got currently and making sure that we know what we have got currently, I would advise you to take the figures from the professional group itself, which is the Association for Palliative Medicine.
Q71 Dr Naysmith: What is the shortfall now?
Professor Richards: I have to say, I have not brought those figures with me but I am sure that I can get hold of them fairly quickly.
Q72 Dr Naysmith: Is it going to be better in five years' time than it is now?
Professor Richards: Yes, on that I can be sure. Because the number of trainees in palliative medicine has gone up, I am confident that the numbers of staff across the country will go up. Having said that, there are some caveats on that as well. A lot of the trainees are women and a lot of them have already expressed a wish to work part-time when they become consultants, and so we should not immediately think that head count converts into whole-time equivalents. I am confident that over the next few years the numbers will increase quite substantially, but also I am confident that we need more.
Q73 John Austin: Even if those targets are met, and, as I say, you acknowledge in your memorandum, you show a considerable move towards the additional targets, but you mentioned specific areas yourself where there is a vacuum. I am conscious particularly of the more inner-city areas which have difficulty in recruitment and retention. Are there any specific measures which are being taken to ensure that there is a more equitable distribution of resources?
Professor Richards: I am not immediately aware of the fact that it is inner-city areas which have that problem. I am sure there may be some inner-city areas, but I think, for example, London, by comparison with other parts of the country, is moderately well staffed in terms of doctors. I think we need to think differently about whether it is doctors or the nursing workforce. I think, in the nursing workforce, particularly for specialist palliative care, again, it is very difficult, from our perspective at the Department of Health, to know what the age profile of the nursing workforce is, because a lot of them are working in the voluntary sector and therefore we do not have records of them. Having said that, we will be working through the National Partnership Group and with all the other voluntary sector colleagues that are part of that Partnership Group to do a survey of the hospice workforce so that we get a better picture of that, because I think we need that for planning purposes.
Q74 Dr Naysmith: You were mentioning specialist nurses just now. Do you think the recently negotiated Agenda for Change will make a difference here?
Professor Richards: Our nursing adviser will take the question on Agenda for Change.
Ms Hawkett: Agenda for Change actually will have quite a huge impact on the nursing workforce pay modernisation, looking at the jobs and skills and competences. One thing that we are very conscious of though is the impact that Agenda for Change will have on the voluntary sector. Primarily this is modernisation for the NHS, but nevertheless three-quarters of our nursing workforce are in the voluntary sector providing specialist palliative care. The National Partnership Group for Palliative Care have set up a sub-group to look at this quite seriously and assess what the impact will be for hospices.
Q75 Dr Naysmith: What do you think it might be? Why are you looking at it, what is it you are worried about?
Ms Hawkett: They are competing for the same pool of staff, and so if the NHS have moved to a different pay system and the way in which they are designing their jobs then, of course, this will have an impact on how hospices can recruit staff. I have to say though that the sub-group have already started their work, and on that group there are a number of hospices who have looked at this already and are ahead of the NHS in many ways, and they have looked at their staff profiles, looked at the grading and actually have done quite a lot of work ahead of the implementation of Agenda for Change. They see it very positively as not just a matter of salaries but an opportunity to redesign. One of the outputs from the sub-group will be the development of a toolkit for the voluntary sector, working with strategic health authorities, the workforce confederation together with the voluntary sector to look at how they can support this change and support one another.
Q76 Dr Naysmith: You say you have got a group looking at the possible effect of this on the voluntary sector. I am not asking you to say when it will be published but when do you think they will have completed that work?
Ms Hawkett: A member of the sub-group is also from Help the Hospices, who themselves are looking at this issue quite seriously so will be working together, and we hope to be able to report back to the National Partnership Group by the summer.
Q77 John Austin: We have referred to the National Partnership Group and about an hour and a half ago Professor Richards was talking about the £50 million and that it is now coming through and being deployed. Of course, palliative care is a complex pattern of provision involving the NHS, the voluntary sector, organisations like Macmillan and Marie Curie and the hospice movement, and there are different streams of funding, and particularly there is the additional funding which has come through the New Opportunities Fund. We have had evidence actually from some organisations and hospices that they are not seeing much of that money and it is being creamed off by the PCTs and not being used in specialist palliative care. I wonder, first of all, if you would like to comment on that, and, generally, what you think the impact of the Treasury's cross-cutting review of funding in the voluntary sector will have on palliative care services?
Professor Richards: If I start with the question about the £50 million. First of all, we developed a set of criteria based on the draft NICE guidance for what that money could be spent on. Then we invited networks, which included both the voluntary sector and the NHS, to develop their action plans in line with those criteria. We then had a group from the National Partnership Group, with equal representation from the voluntary sector, the NHS and Department of Health, to assess the action plans and to make sure, first of all, that the actions recommended genuinely were related to specialist palliative care. Secondly, to make sure that there was a fair contribution going into the voluntary sector and into the NHS, and that would vary from place to place, but we had the right group, I believe, to assess those plans and make sure that there was a fair distribution. Having said that, we are now monitoring how that money has been spent, what we have got for that money, as a population, if you like, in terms of doctors and nurses, extra palliative care beds, etc., so we are watching that money very closely indeed. In terms of the cross-cutting review, we are looking now towards a different mechanism for funding the hospices, and, again, working through the National Partnership Group to establish the right way of doing this. We have two sub-groups that are relevant to this, one looking at the rights and responsibilities of different partners with the voluntary sector and the NHS, and one which is looking specifically at the costs of providing hospice care. A lot of work again is being done by partners within the voluntary sector on this. I think the way forward will be to develop a tariff for the costs of providing an inpatient stay within a hospice, for example, and the sooner we can reach an interim tariff the sooner we can change the commissioning model in that direction. Clearly, it will then be for local negotiation about the level and volume of service which is provided locally. Again, I would hope that would be in line with proper needs-based assessment. Of course, hospices will be able to provide services above and beyond those agreed levels, should they choose to do so with their voluntary funding. That is the direction of travel as we see it.
Q78 John Austin: I think it has been said earlier, hospices do not only provide residential care, they act as a resource and a support, and I think, as Mrs Scott was saying in terms of children's hospices, very often they do not provide residential places at all but are there as a resource and support. Of the New Opportunities funding, I note that £48 million of it was specifically for home-based care teams and bereavement teams dealing with children. You mentioned a group of organisations who are represented on the working group, or committee, or whatever. Is the children's hospice movement involved in those?
Professor Richards: At present, the National Partnership Group on Palliative Care is related to adults. That may be something which needs to change over time, or it may not, it depends, I think, how the children's NSF develops and what is most appropriate for their services.
Mr Bradley: Can I just link back to my earlier request, when you happily agreed to look at the North West as an example, to see again how the funding flow from NOF and other things has fitted in to that co-ordination of the services for the region? That would be very helpful as well.
Chairman: Seriously, if it is possible for you to give us an indication in our own areas, mine is the North East.
Q79 Mr Amess: There are three points I want to put to our witnesses which are not on our script. Obviously, all hospices are very grateful for any money which they receive but, at the same time, they value and cherish their independence. Recently I was talking at some length to the Duchess of Norfolk and she advised me that it is a frequent practice for hospices to set their yearly budget without formal notification from Primary Care Trusts of the extent of the annual grant, including any uplifting fund. Would our four witnesses agree with her that the financial management of the hospices would be assisted if such notification was received prior to the commencement of the new financial year and/or the funding was paid directly to the hospice?
Professor Richards: I think this relates back to the earlier discussion about commissioning, where if we can have proper planning of services according to need, working out where those services need to be provided and then PCTs, often PCTs working together, not just one PCT but PCTs working together across a network, working out what they need to purchase, if you like, from the hospices, yes, I think we can improve that. I think we are improving that by having developed these networks. I acknowledge that in the past that has not always worked very well, and certainly I would hope through the development of networks that would be better.
Q80 Mr Amess: The second issue, have any of you, in your various fields of involvement in this area, encountered any problems with access to palliative drugs?
Professor Richards: I think, in terms of access to drugs, it depends. Sometimes there can be difficulties with access out of hours for particular drugs. Is that what you are referring to?
Q81 Mr Amess: Yes.
Professor Richards: Again, there are lots of examples of good practice around the country where arrangements have been made with PCTs to make sure that pharmacies are open. I think a lot of this is down to planning in advance and making sure that we do have the services, including the pharmacy services, in place. One which perhaps we have not touched on very much is the new GP contract, and the opportunities, in a way, that gives for Primary Care Trusts to reshape out of hours services completely, reshape the medical services but also then to integrate them with nursing services, with social care services and indeed with pharmacy services, to make sure that across a whole patch they have got better out of hours provision.
Professor Tanner: I think that the majority of the cases we are talking about should have open access to a hospital facility, and if there was a question of drug availability out of hours it should be solved that way as a last resort. I think there are issues relating to the expertise in prescribing analgesia for children, and of course this is where we welcome the appointment of as yet a relatively small number of specialists in the area but growing, and the activities of the British Society of Paediatric Palliative Care, which has some 50 nurse members now. There is a lot of activity and development there, but I think it has been a problem in the past.
Q82 Mr Amess: Thank you. The final issue I wonder if you would like to comment on is, I have been advised that, at present, in South Essex, patients and families may wait between two and 12 hours for an on-call GP to arrive. Do any of you have any observations about out of hours GP support and service provision? I know that you have been to our area and had meetings. It has been a big issue in Thurrock, I gather.
Professor Richards: The first thing I would say is that out of hours services are of huge importance in the delivery of palliative care. If people are going to stay at home, having good out of hours services is clearly an important component of that, otherwise they may have to go into an accident and emergency department when otherwise they could have been cared for. That is important. I think the new contract, which is going to be coming in and where PCTs will be assuming responsibility for out of hours services between April and December of this year, does provide that opportunity to get this a whole lot better than it has been in the past. No doubt it will be a different mix of provision of care between doctors and nurses, but that may be no bad thing in itself, and there is a lot of work going on amongst the primary care team within the Department of Health to make sure that comes about.
Q83 Mr Amess: You would agree with me that the examples certainly I have been given of the wait at the moment can be very distressing for the relatives?
Professor Richards: I do not know the details of the cases, but if there are those delays certainly that would be distressing to relatives, and we should certainly make sure that there are better services, but I think we have the opportunity to do that.
Professor Tanner: For many the first port of call would be NHS Direct and we are working with them to try to improve the situation that a child with a known medical condition is not known to NHS Direct, as it were. It would be better if there were knowledge of that child so that agreed protocols could be put into place more swiftly.
Q84 Mr Burstow: I want to come back on this point about out of hours services and what you have just said, because how real is this opportunity to re-engineer, redesign the services in the sorts of timescales we are talking about? You have mentioned that by December PCTs will assume responsibility for this. Obviously, work is being done on this already, but certainly things that I hear would suggest that we are likely to have, in many parts of the country, the traditional GP-led models continuing, because there is not enough time to put in place all the necessary reskilling, upskilling, and so on, to design the new organisations. How confident are you that really we will see the opportunities you are outlining being realised in practice?
Professor Richards: I cannot say I am an expert in this area. I do know that a lot of planning has been going on at the Department of Health involving GPs in this process, and it is the PCTs assuming responsibility for commissioning the care, not necessarily for delivering it, and looking at different models of having quite large-scale organisations, covering quite a wide population, providing out of hours care. They have done a lot of work looking at what the frequency of night calls is to GP services and seeing how that can best be provided. I think they are giving the models of best practice to PCTs. Of course, it will take time to move to those new models and I do not suppose it will all be sorted out between now and December, no, but I think that the opportunity is there and over time that can be developed.
Q85 Mr Burstow: It has been put to me that in some parts of the country the likely outcome by December is that contracts will be let with many of the organisations which already provide out of hours services for relatively long periods of time into the future, so they are locked into an existing model rather than having the opportunity to engineer a new model. Is that something the Department is alive to and is it working with PCTs to try to avoid it?
Professor Richards: I am sure the Department may be alive to it. I have to say, it is not the area that I am an expert on, but we can seek to find out more for you on that.
Mr Burstow: If you could, that would be very helpful.
Q86 John Austin: Can I go back briefly to the Treasury's cross-cutting review, and it may not be the area of responsibility of anyone who is here. My understanding is that 2006 is the deadline by which the Department will have to pick up all of the costs of services provided in the public service by the voluntary sector. In order to calculate those costs it will have to set up a system of national tariffs, and a number of the people who have given written evidence to us have expressed some concerns about how that will pan out. Would it be sensible if we could write to you or the Department with the specific questions and queries they have got as to how that will pan out and what work is being done on national tariffs?
Professor Richards: By all means, write to us. Obviously, some of this is in the hands of the Treasury initially but the Home Office are doing more work on the cross-cutting review as well. I think I have told you the direction of travel we are taking in relation to hospices in particular, which is, as soon as we can do the work to make sure we have got a tariff which could be agreed with our partners in the voluntary sector which is a reasonable tariff then I think we can move quite quickly from there to a transition from the sort of block grant contract, which is present in a lot of places now, over to a commissioning model based on that tariff.
Q87 Chairman: Can I ask each of you for a very quick, final thought, and it is very unfair to ask this question but I will ask it anyway? Imagine you are free of all the constraints that you have got at the present time and the roles that you have and you are starting from scratch in planning palliative care provision in this country. What would you do, what would be your ideal model?
Professor Richards: In terms of the model for non-cancer patients, I do not think we are at the point yet of knowing what that best service model is. I think we have got the right way of getting to knowing about it, through the initiatives I described earlier. I do think that absolutely vital to any model will be more specialist palliative care staff and better-trained generalist staff.
Q88 Chairman: Actually I am thinking of the structures of provision, because you talked about the way in which, in certain areas, health and social care were meeting together on the whole issue. What about that sort of issue, if you were to look afresh at how we structure our health and social care system?
Professor Richards: I think the opportunities are there through pooled budgets. I would like to see more of that being done and again more proper planning done at a local level between health and social services to get this right. I think that is doable but I am not saying I think it has been done yet.
Ms Hawkett: Similar, and I think the thing that really we are all striving towards and would love is that integration between social services, the Health Service and the voluntary sector, because I think that is an important element of the delivery of palliative care.
Q89 Chairman: If you were starting from scratch, would you have a split between health and social care? In terms of palliative care, to me, if there is any area which does not make any sense it is this area, where you have debates about means-testing, on one side, and free care, on the other. It is pretty unfair to press you on this, because obviously I appreciate your position in the Department, but is it not somewhat unhelpful to have that split?
Ms Hawkett: I do not think it is always very helpful at all, and I would much prefer to see a system which was totally integrated. I would like to say also that, in that integration, that planning, I would like to see a stronger voice for the user.
Professor Tanner: I would endorse the recommendations in the September last year publication from ACT and the College, the association for children with terminal illness and their families. I think they describe it very well. The recommended model of care is a locally-based, multidisciplinary team, with ready access to a children's hospice and to specialist paediatric palliative care advice for families and professionals, when needed. Most of the day-to-day care should be in the community, with the specialist community teams working in co-operation with primary care, social services and education.
Q90 Chairman: I am just checking whether we have that as a submission, that document to which you have referred?
Professor Tanner: I do not know. It is an available document, which certainly we can make available to you. It is the second edition, at the moment.
Q91 Chairman: Thank you very much.
Mrs Scott: I think, building on that and what Sue was saying, we really do need to listen to the voice, and in our particular case we need to listen to the voice of the child and the young person. I think we have got better at listening to the voice of the mother and the father but not necessarily the child and the young person. For example, quite often, particularly for teenage cancer units, they are such great places to be, the young people like to stay there because they get to see the football stars, pop stars and everyone. Really, I think, if actually we are listening to what they want, often they want to maintain as normal a life as possible and to be young people first and foremost.
Chairman: On behalf of the Committee, can I thank you for a very helpful session. We are most grateful to all of you for your participation. Thank you very much.
