UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 454-iv

House of COMMONS

MINUTES OF EVIDENCE

TAKEN BEFORE

HEALTH COMMITTEE

 

Palliative Care

 

Wednesday 26 May 2004

MISS MELANIE JOHNSON MP and DR STEPHEN LADYMAN MP

Evidence heard in Public Questions 271 - 401

 

USE OF THE TRANSCRIPT

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Oral Evidence

Taken before the Health Committee on Wednesday 26 May 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 John Owen Jones

Dr Doug Naysmith

Dr Richard Taylor

________________

Memorandum submitted by the Department of Health

Examination of Witnesses

Witnesses: Miss Melanie Johnson, a Member of the House, Minister for Public Health, and Dr Stephen Ladyman, a Member of the House, Under-Secretary of State for Health, Department of Health, examined.

Q271 Chairman: May I welcome our witnesses and express our thanks to the Department for your co-operation with this inquiry. Would each of you introduce yourself to the Committee and perhaps say a little about where your responsibilities are, in terms of palliative care?

Miss Johnson: I am Melanie Johnson. I am the Minister for Public Health. My responsibilities in respect of palliative care are related to my cancer responsibilities, which are in addition to my general public health role. Those cancer responsibilities include all of the adult palliative care side of things.

Dr Ladyman: I am Steve Ladyman. I am responsible for children's health, and so I have responsibilities in respect of children's palliative care. I am not responsible for children's social services, which sit with the Minister for Families in the Department for Education. I also have responsibility for older people's health. So if the Committee wants to investigate issues around continuing care, then they sit in my portfolio.

Q272 Chairman: Can I begin by exploring for a moment a theme that we have touched on before? You are probably aware from the minutes of previous meetings that I have raised the question of societal attitudes to death and dying. I wondered what your thoughts were on where we are in relation to our attitude to death and dying, in the context of palliative care policy. One of the points that I have raised over a number of sessions is that, certainly growing up in the 1950s and 1960s, I think our attitude to death and dying then was more open than it is now. When we are looking at how we can try to move more towards people's choice to die at home - which appears to be the choice of most people and, in the main, their carers initially - why is it that we cannot do that? Is there a connection with attitudes to death and dying? If our attitudes have a bearing on policy, what is the Government's responsibility to address the whole issue of death and dying, for example in the education system? I know that you are not responsible for that, but it is an issue which, I am sure you will appreciate, links into what we are looking at with palliative care.

Miss Johnson: To start with, I am not sure that I entirely agree with you that things were better a couple of decades ago.

Q273 Chairman: I did not say that they were better. I think that they were more open.

Miss Johnson: I am not sure whether they were more open.

Q274 Chairman: Maybe it was a different environment and just a different area of the country.

Miss Johnson: It may be there are different attitudes around different parts of the country. We are talking here not of government policy but of experience and understanding, as it were. I think that there is still not enough focus on the needs of dying people, nor enough acknowledgement that we need to provide for them; nor enough focus on it in general; nor is there enough openness about death. I think that you are quite right in saying that that is a big issue. I am just not sure that I agree with you about the historical bit of it, as it were. There may have been different ways of dealing with things in a more ritualised way in the past but, as we have moved away from the more formalised rituals around this, we perhaps have not instituted anything that has taken its place. The lack of provision that enables people to die in their own homes is of continuing concern to us and a matter which we are determined to do something about.

Q275 Chairman: Regardless of our differences on whether or not things have changed, do you think that the Government have a role to play in perhaps encouraging healthier attitudes towards dying and death? If so, what can you, as a Government, do in encouraging this change in attitudes?

Miss Johnson: Of course the Government have a role. We all, as individual adults, have responsibilities - in respect of our family, the children we bring up, grandchildren, and so forth - ourselves to demonstrate a different attitude, and not all of it can be passed to the Government. I think that the Government do have responsibilities too. The Government have responsibilities to make sure that healthcare professionals have the right sorts of skills and understanding, and deal with things appropriately. We need to make sure that the service is focused appropriately, and we need to make sure that patients are given the sort of information and choices that they should have at all stages of their care, including palliative care.

Q276 Chairman: I know that education is not your responsibility but, from your knowledge of what we might call health and social education, are you satisfied that we give sufficient time to exploring these issues of death and dying in the school environment?

Miss Johnson: As an ex-Ofsted inspector, I think that we too often place too many responsibilities on schools. There is a limit to what can be done within a 25-hour school week, in effect. We cannot go on cramming things into schools. Of course it is good to include more education of a basic kind, but when you think about the number of hours in school as against the number of hours a child spends out of school, I think that wider society, community provision, the role of the family, the role of parents, and the role of government outside of schools are as important as what goes on in the schools.

Q277 Chairman: As an ex-Ofsted inspector, do you feel that teachers are adequately prepared to deal with questions of death and dying in the classroom environment? I will give you an example from my childhood, when we used to be encouraged to give our news. My news to the class, probably at the age of ten, was that I had seen this dead body in a coffin at a funeral. The teacher moved on to somebody else immediately and was not able to explore that. It struck me that, on reflection, that teacher did not know how to handle that kind of area with kids as young as we were. Do you feel that we sufficiently prepare teaching staff to handle questions, where a child has had a bereavement or a child in a class may have died, and they have to respond to that loss?

Miss Johnson: I think that you do need to talk to education Ministers about the current state of teacher training and how well equipped teachers are. But it is fair to say that different adults will themselves have different abilities to deal with very emotional and difficult issues, and indeed different levels of fear about the issues with which they are dealing - and different degrees of sensitivity about how they deal with those issues. It is probably not realistic to think that all teaching staff can be skilled up to a certain level on that. They have gone in to teach children particular subjects or general skills. The idea that they are all going to be equally good and equally sensitive - it would be lovely to get there, but it is probably utopian.

Dr Ladyman: I would just add one thing, before I go back to your original question. It is actually quite difficult to teach children the difference between being and not being. Twenty years ago, and perhaps in our childhoods before that, these things were taught in a religious context. Children were taught about being on earth and alive, and then being in heaven. Now, increasingly, we do not teach these things in a religious context. Many of us do not have religious faiths. It is much more difficult to deal with the concept in a child's mind of just being and not being. In that, there are quite a lot of difficulties in bringing up children to understand death. Going back to your original question, we have also to accept that there is a difference between the role of palliative care for children and palliative care for adults. In general, in so far as you can generalise about these things, palliative care for adults is about an end-of-life experience. For children, broadly speaking - unfortunately not always - it is about dealing with a life-limiting illness, where death is going to be postponed, and which is about a much longer-term process of care. So I think that we need to realise that we are dealing with two very different concepts when we talk about palliative care for adults and palliative care for children.

Q278 Mr Amess: The Minister has already mentioned about home deaths, but I must comment, Chairman, on your opening question. I have to say to our two Ministers that the expert witnesses we have had so far have definitely given us the impression that there was more openness and a more relaxed reaction to death than there is at the moment, and they very much hope that perhaps it will change eventually.

Miss Johnson: Perhaps I can just respond to that remark. I think that there is increasingly more openness; it is just that we have not got to where we would like to be, nor where we should be. I think that there is a trend in the right direction. You have had a lot of very expert people come and give you evidence on this inquiry, and that may well be what is being reflected; but I do not think anybody would say that we have arrived at where we ideally ought to be on this.

Q279 Mr Amess: It is just that we have been given the general impression that children have perhaps been protected from death. They do not go to funerals as they used to and, as our Chairman has said, they do not see dead bodies. But let us move on.

Dr Ladyman: There is a different societal change, in my view. I will be really controversial here.

Q280 Chairman: Be careful!

Dr Ladyman: I do not think that the difference is necessarily a difference in attitudes to death. I think that there is a serious change, and a very worrying change to my mind, about society's attitude to caring. As the Committee will be aware, I have announced that we are going to produce a new vision for adult social care. One of the biggest questions in my mind - and I have started people off on trying to think about it as we write that new vision - is the way it seems that we no longer want to care for each other in extremis: whether it is because of old age, disability, or for whatever reason. We are increasingly willing to let somebody else do it, usually the State. If somebody comes along with a solution for caring for somebody in our family, it often appears preferable to providing the caring ourselves. The role of family, the role of neighbourhoods, the role of the community, are gradually diminishing in a caring context. In my view, it is one of the most worrying trends about society for the current generation, because the state cannot provide all the caring that we are rapidly giving up doing.

Q281 Mr Amess: You are absolutely right. You have touched a chord with all of us, when we are presented with constituency problems and have to bite our tongue on some occasions because of the unreasonable demands.

Miss Johnson: You also have to recognise, however, that the people in the family units have their own needs, and how their fears, their anxieties and their issues are being addressed in all of this. Often we have to look not just at the individual but at the whole family support network and what those needs are, if we are to address some of the issues that Stephen is rightly raising.

Q282 Mr Amess: To get back to home deaths, it appears to the Committee that, for any number of reasons, many people do want to die at home or be given the opportunity to die at home. To deliver 24-hour nursing care in parts of the country really is not feasible. However, given that there is this demand for people to be given the opportunity to die at home - I know that it is at an early stage in terms of what the Department is doing - can you share with the Committee some ideas as to how this can be achieved?

Miss Johnson: First of all, there is a whole complex set of things that will help this to happen, not least some of the changes that are going on in out-of-hours provision. We could come on to it in a moment, because I am sure you will be interested in that - though I know that there is a separate inquiry on it in any event. In terms of the approach we have, it is encapsulated in Building on the Best. It is looking at the way in which we can care for and improve the care of people coming to the end of their life by ensuring, for example, that there are training programmes in place to make sure that all people will have access to high-quality palliative care. That is why the Secretary of State announced in December a £12 million investment on the training side, to increase the skills base and widen the skills mix of a large pool of staff who are actually there. We also have the Cancer Services Collaborative who are working in conjunction with Macmillan, Marie Curie and also the Lancashire and South Cumbria Cancer Network. They are looking specifically at the implementation of specific end-of-life care tools. The investment over time and the fact that we are going to give greater choice to patients in where they want to live and die, and the decreasing numbers of old people who are transferred from care homes to district hospitals in the last week or so of their life, will mean that more people will be able to die at home. But, as I said in response to your earlier remarks, a lot of it is also about the family support and looking more widely than the individual patient.

Q283 Mr Amess: The Committee enjoyed a very pleasant visit to Edinburgh last Monday and Tuesday. As part of the programme we saw the excellent facilities at the Marie Curie centre there: an absolutely spot-on, centre of excellence. It was very impressive. Perhaps I may share with both of the Ministers that, as regards the report that was commissioned by Marie Curie into the economic case for people dying at home, they told us that £100 million invested into services to support dying at home would free up to £200 million for the acute sector. Do you agree with their analysis of it? If you do agree, do we have anything in progress to try and make this happen?

Miss Johnson: I think that their analysis is a very interesting and powerful one. We have not audited their figures, as it were, but I can quite believe that their figures are along the right lines. What we want to do is to make sure that we are actually enabling more people to make the choices that they want to make. That is not to say we should be prescriptive about what those choices are. The whole point is that there should be a service based on the needs of patients and their families. In terms of the provision, therefore, there are changes that we already have in place - like the single assessments for older people, for example - which are generally encouraging a greater focus on needs and recognising the way in which we ought to integrate people's needs across the piece and provide services. I mentioned the out-of-hours provision. There is huge scope for integrating a whole range of professional skills to support people in remaining at home, simply out of the changes in the out-of-hours provision. It is recognising that, if we do things like develop district nursing - district nurses are very keen to be trained and there is huge interest in the work that is going on in training district nurses in palliative care and support -we stand a much better chance of providing for people in a home setting. Also, if there are immediate problems - a problem with a catheter or with something else - that previously would have led to an A&E admission, maybe only for a day or so or maybe for longer, those patients will remain at home more easily and much better supported than they have been in the past.

Q284 Mr Amess: So this study that has been commissioned is helpful on the part of the Department?

Miss Johnson: It certainly is. We welcome it.

Q285 Mr Amess: And the Department is not going to challenge the savings?

Miss Johnson: As I say, I do not have any figures in front of me, so I could not comment on the detail of the figures. But it is certainly true that we welcome the work that they are doing. Indeed, the Secretary of State launched their campaign on this. You can tell from that, therefore, that there has been a close working with and close support from the Department. We are certainly looking to see the extension of better and more palliative care in a home setting, and obviously that is the focus of the work that they are doing.

Dr Ladyman: So far as my portfolio is concerned, children and older people, I readily acknowledge that there are massive savings to be made by our being more proactive about, first of all, stopping people getting into hospital in the first place and also delivering far more care at home - both healthcare and social care. It will be a major theme in the vision for adult social care that we need to start shifting resources to where it can most effectively be used. In many areas that will be social care, in order to prevent some people ever getting into the healthcare system in the first place.

Q286 Mr Burns: Many people consider that the Canadian Government are leading the way in producing a comprehensive palliative care policy with their new national strategy. Are you familiar with what the Canadians are doing?

Miss Johnson: No, not in detail. You are going to tell me. I do not think that you will tell me that you have been visiting there as well, are you?

Q287 Chairman: I am afraid not!

Miss Johnson: If you felt the need to visit, I might also find a need to visit!

Dr Ladyman: It is not warm enough! You will probably need to look at Hawaiian palliative care!

Chairman: We were in Finland when it was 17º below.

Q288 Mr Burns: Let me help you by outlining some of the things they are using the legislative process to provide in Canada. They are giving the right to carers to have six weeks' paid leave to care for a dying friend or relative. They are also taking measures to ensure that jobs and income are protected during that period; that there is access to a virtual hospice on-line, which includes chat rooms, an on-line nurse practitioner, on-line consultants - all as part of a package to help people at what is a very difficult, and also a very stressful and demanding time. I was wondering - and I presume that this will be off-the-cuff as you are not that familiar with the details - do you see these areas of policy that the Canadians are legislating for in Canada relevant or possible to bring forward here in the UK and, in particular, and most relevant to carers, the thought of six weeks' paid leave?

Miss Johnson: I am not going to comment on six weeks' paid leave ----

Q289 Mr Burns: That was the question though.

Miss Johnson: That was the question.

Q290 Mr Burns: Yes. Would you consider six weeks' paid leave?

Miss Johnson: We are not considering six weeks' paid leave at the present time.

Q291 Mr Burns: So I take that as "no"?

Miss Johnson: I thought what you were actually inviting me to comment on was the general thrust of the Canadian ----

Q292 Mr Burns: That may be my next question. My initial question was would you consider six weeks' paid leave for carers?

Dr Ladyman: Since I have the lead on carers, perhaps I could answer in a more general sense. Certainly the Prime Minister has just announced that he is very keen to see that we do explore work-life balance issues for carers much more thoroughly. We are about to engage in a series of consultations with employers as well as with carers' groups. In fact, there are to be two round tables in the next month or two, which I will chair, to start teasing out these issues - with a view to the possibility that at the end of 2006 we may wish - people willing and returning the correct government at the next general election - to legislate on extra rights for carers in the workplace. So the answer is not entirely no; the answer is a maybe.

Q293 Mr Burns: There may be. We will know more about whether it is a maybe or a yes or a no before May of next year?

Dr Ladyman: I am sure that would be the case.

Q294 Mr Burns: I think so too.

Miss Johnson: We look forward to all political parties doing exactly the same thing!

Q295 Mr Burns: On the general points of the ideas with which the Canadians are moving forward - the on-line help with the nurse practitioner, the chat rooms to give people support and to make them feel that they are not isolated, that sort of help and encouragement - do you think that in principle there could be a role for that sort of facility and service here for carers, or is it something that should be considered, while you are having your round-table meetings, as part of a package?

Dr Ladyman: It comes back to the comment I made right at the start. I believe that carers are fundamental to all the things that we have to drive forward, in social care and in palliative care. I would not limit our choices to anything. We have started a consultation on end-of-life choices, and carers have to be a key part of that. If, during the process of these round tables, we identified a need to improve services for carers who are helping somebody at the end of their life, and that they will require a different pattern of care support than, say, carers who are looking after somebody who is long-term disabled or who has a long-term condition, then we have to open our minds to the possibility of it.

Q296 Mr Burns: Can I ask you one question not related to Canada? Are you concerned that it would seem that more and more carers in this country are older and older, or are very young children looking after a family relative? There seems to be a huge gap in the middle.

Dr Ladyman: Yes, you are absolutely right. It comes back to the issue I started off with when I said that I was going to be controversial, and suddenly you all agreed with me. Maybe I was not being controversial: just outspoken. It is part of this mindset that we have got into as a nation, as a society: that work is everything. Between leaving school and retiring, work takes priority over everything in our lives. Quite often where, in earlier generations, earlier times, we would have said, "Okay, a family member now needs care and that has to be my priority", we do not do that any more. I am as guilty as anybody about this. We all leave university; we fly the nest and go to the other side of the country to follow our careers. We never stop for a second to think that we are leaving our parents behind, several hundred miles away; that sooner or later they may need care and we will not be there to provide it. We just assume that, somehow, some mechanism will be put in place to deal with it. That is part of our attitude to work; it is part of our attitude to society, and it has to change. I do not have a clear idea how we change it. It is something that I hope the vision for social care will start to explore. I hope that it is something that the Committee will suggest ideas about.

Q297 Mr Jones: Minister, you tempt me into controversial territory.

Dr Ladyman: That is always my hope!

Q298 Mr Jones: Given what you have just said, how does that attitude coincide with government programmes in order to get young mothers into work?

Miss Johnson: Are you not bothered about young fathers going into work?

Q299 Mr Jones: Single parents into work or parents into work, when children are left.

Dr Ladyman: I think that there is a range of things that can be done which can help carers marry the balance between work and caring.

Q300 Mr Jones: I think that you have moved away from controversy there.

Dr Ladyman: That is what these round tables are about: exploring that balance and how we can change employers' attitudes to allow people to have a caring role. I have to say that some of the biggest companies - BT, British Gas - are very focused on the need to involve carers in their workforce, because they can see the benefits of carers. They realise that, by providing flexibility for them in the workforce, they can mix the role of caring and work. I think that is exactly the same with young parents, especially single parents. Being brought up in an environment of poverty is the worst possible thing for a young child. Allowing the parent to work, if you can allow the mix between their caring role and their work role and get the balance right - if you can provide the structures to allow them to do that - then I think that the net benefit is a positive one. I am not claiming that I have all the answers here by any means. That is why I pose the question and pose it to all of us. I suspect that in many cases we have moved hundreds of miles from our parents.

Q301 Mr Bradley: Would that include the interrelationship between caring and work and pensions provision?

Dr Ladyman: Yes, that has clearly got to be a factor in the equation.

Q302 Chairman: Can I take you into another area? In your evidence you talk about being committed to an equitable distribution of hospice services. One of the issues that comes over a key area of concern is that the nature of hospice provision and the reliance upon voluntary fundraising has resulted in an inequitable distribution of services. One of the witnesses from Marie Curie gave an example from my own part of the world, where he talked about "extraordinary inequities" in Yorkshire. In the North Yorkshire area, Marie Curie was asked to provide 20,500 nursing hours to a population of 886,000, whereas it provided only 11,000 nursing hours to West Yorkshire, which has a population of 2.3 million. How do you, without destroying the voluntary ethos of much of the work being done, and rightly being done, in palliative care, address these inequities and discrepancies?

Miss Johnson: To start with, obviously the PCTs now have the prime responsibility for local commissioning of services, and those should be based on the needs of their population. So a better understanding, a more local understanding, of the needs of the population ought to help in general. You are talking about hospices, but I am talking probably more about palliative care.

Q303 Chairman: The comment here was about palliative care. It was the Marie Curie home care provision.

Miss Johnson: We are talking more generally here than, as it were, the buildings and the facilities provided out of those buildings. In terms of the distribution, we accept that there are some inequalities, and there are also some inequalities of provision for certain groups. BME, for example ----

Q304 Chairman: I think we will move on to that later on.

Miss Johnson: ...is an issue on which I think more progress needs to be made. We have done some things on that by, for example, supporting grants to a number of organisations actually looking at that. - including things like the Policy Research Institute on ageing and ethnicity, Cancer Equality, Cancer Black Care and the Cancer Resource Centre. So there are grants going out to try and address some of those issues. However, I think we have to recognise that there are also social barriers in place which might affect delivery and that there are also difficulties in collecting the data. We do not have as good data as we would like to have. That needs to be sharpened up in terms of the response of NHS trusts, for example, in the data that is collected and its accuracy. There are some very good practice examples amongst specialist palliative care providers, in terms of BME and working closely with the communities. So there is some good work to build on. The issue is to mainstream the work that is going on now, to tackle just the sorts of inequalities and issues of distribution that you are talking about. One of the issues that we are looking at now, for example, is also the distribution of hours of availability of district nursing staff, because that is another issue in terms of palliative care. In some areas we know there is 24-hour cover; in other areas it is basically nine to five. We do not know the details of that. Just to give you a piece of new information which is not yet available elsewhere, we are looking for an independent patient-focused study on this, to determine how all providers are ensuring end-of-life care, and the quality of that. Terms of reference are being determined at the moment, and we are looking to commission some work to build on that over the autumn, in order to get some meaningful data on which we can base decision-making and also to inform the commissioning work of the PCTs.

Q305 Chairman: I come back to my original question, which was about North Yorkshire versus West Yorkshire, where there are substantially more resources in an area of less need. With respect, the mechanisms you have described, where you are relying upon PCTs to determine the level of need in a particular area, does not address the fact that a wealthy area appears to have more ability to develop services for a population with less need than a poor area. I am not sure quite how, within what you describe, that will be addressed. I am not suggesting you do this, but would you consider withdrawing support from hospice funding or palliative care funding in certain areas which appear to be over-provided compared to others, in the kind of example I have given?

Miss Johnson: As we get better information - and we are increasingly getting better information and taking steps to get more better information - we will be in a position to make sure that, if money is going out on any particular projects or in any particularly targeted manner, as some funds have done in this area, they are going out to better equip those areas where the provision is less good. As you know, the funding formula for PCTs does broadly recognise the needs of a local population in health terms. So the more disadvantaged communities will be receiving greater funding through their PCTs. Some of the imbalances which you are talking about, therefore, have grown up historically, are hopefully now being addressed, and will be addressed fairly rapidly by the future arrangements.

Q306 Chairman: Does the funding mechanism of PCTs take account of the ability of certain areas to fundraise more effectively than others?

Miss Johnson: It takes into account deprivation and it takes into account need. Often the areas where there is the greatest deprivation have the worst health and so, on both deprivation and health need, those areas will come out to have higher funding than areas which are more affluent and may traditionally have had better provision. There is not a specific recognition, as far as I am aware, of a fundraising component, as it were, to the funding.

Q307 Chairman: You believe that, over time with the rearranging of the PCT funding formula, the kind of discrepancy I have described in North Yorkshire and West Yorkshire is likely to be addressed?

Miss Johnson: Yes. I think that is why also we have made sure that, where we have handed out money, we are being very scrupulous and demanding of those who have put in bids, to make sure - for example, where we are looking to extend the skills base - that money is going on very good projects in areas where they certainly need that sort of support.

Dr Ladyman: There is another tool in respect of children's services you need to be aware of. That is the National Service Framework for Children, which we hope to publish in July and which will have a chapter in it about palliative care for children. We would expect PCTs, in doing their strategic planning, to be working towards meeting the vision which is in that document. Over a period of time, therefore, we would expect all areas to have that type of service. Clearly they will make local decisions about local priorities and about exactly how they will deliver it, but they will all work within that same framework.

Q308 Mr Jones: I will come to asking questions about palliative care for children in a minute, but perhaps we can get back to the equity of provision of hospices. Hospices have been set up by voluntary organisations. So how is it possible to have equity of provision unless there is some national plan, unless there is a national funding mechanism?

Miss Johnson: This comes back to the question about whether we are talking about hospices ----

Q309 Mr Jones: I am talking about hospices.

Miss Johnson: ...or palliative care. I am more concerned that the overall package of palliative care is a supportive one. Increasingly, what that does is to enable people to spend as much time at home as they would like to be able to do.

Q310 Mr Jones: Yes, I understood that because you answered the Chairman on those points. What I am now asking is this. Because hospices are much more likely, from the evidence we have seen, to be set up in areas which are better off - because they require voluntary funding - then there is currently an inequity of distribution. How do you address that inequity of distribution?

Miss Johnson: I think that depends on how you see the future development of the services being primarily focused, and whether in fact actual hospices, as we understand them now, are needed in all areas where they currently do not exist - to make sure that the same level of service is provided to those areas. That is to say, whether you need a lot of extra beds provided in a hospice setting, or whether you need the resources that are available: in which case clearly the PCT and local commissioning can increasingly, with the right range of skills and staff available and the right sort of work being done, provide a lot of the sorts of services that are currently being provided out of hospices for people on a daily basis or ----

Q311 Mr Jones: Would you admit that, if you have a hospice within 20 miles, it is an advantage in providing palliative care, whereas if the hospice is 100 miles away it is a disadvantage?

Miss Johnson: That may be so at the present time. I cannot really comment without looking at the different packages of care that are available in any different area. I do not think it is possible to generalise like that. What is certain is that we need to make sure the overall picture of care, the overall package that is available for patients and their families, is the right sort of supportive package. That means a lot more concentration on people being able to be supported at home; a lot more availability of all the services that might be useful for people to stay in their own homes; recognising the role that hospices will play in that, but also that that expertise could sometimes be provided within other settings than perhaps those that are traditionally associated with it.

Q312 Mr Jones: Assuming that hospices provide any function whatsoever - and I think we agree that they do and they are a benefit?

Miss Johnson: Yes, of course.

Q313 Mr Jones: Then it must be advantageous to be near where the benefit is, rather than a long way away from where the benefit is.

Miss Johnson: It depends on what the demand is, I suppose. A hundred miles is your example. I am not sure whether that is a particular example that you have in mind or just an illustrative example.

Q314 Mr Jones: You are criticising me for generalising and I am trying not to say that this is just a problem for one particular area. I am sure that we could come up with examples of regions in the country where there is no hospice provision and I am sure that we could provide them to you. However, I am simply trying to get you to admit that there is a problem, and then ask you whether you have any intentions to do something about the problem.

Miss Johnson: What we want to do overall, as Stephen has said, is to provide things to standards which will be and are being set down nationally. Those standards are to look across the piece. We have guidance from NICE, for example, on supportive and palliative care, and the services that we expect PCTs to provide. The palliative care investment plans, at each network, are looking across the piece at needs and are assessing those needs. Therefore, what we want to do is not necessarily to focus on hospices - I do not think the Select Committee, as I understand it, is focusing particularly on hospices - but more generally on palliative care.

Q315 Mr Jones: Yes, but these are the questions I am asking you now. We will move on to palliative care in a minute.

Miss Johnson: But I do not think, with respect, that we should take those things as separate. We should look at the overall offering that is available to patients and their families. What that should do is see what the role of hospices can be within that, where they exist; what the plans are for the local purchasers to purchase more provision of a bed-based kind, if that is what is appropriate, and how that should be delivered; the expertise that undoubtedly, on an outreach and a day basis, comes from hospices too, which also needs to be provided in some way or another; and the work that can be done in a community setting, with or without the hospice base. There is a whole menu of options there. Different geographical areas may have different needs and different best ways of providing those. To some degree, that is one of the good things about the PCT-based arrangements: that, within the standards which are being set nationally, what we want to do is to see that the provision meets the need and the best arrangements for people locally, given the geography of areas and all the rest of it. I suggest that a single model is probably never going to be exactly it. What we have to have are demanding standards; to be clear about what sorts of outcomes we want for patients; and to make sure that the various resources locally - that have been there historically or ones that can be put in place - are the ones that will support those standards and those outcomes for patients.

Q316 Dr Taylor: I apologise for being late and if I am asking what has been asked, Chairman, please rule me out of order. It is really to bring in the state of consultants starting in palliative care. We went to Edinburgh very recently and were incredibly impressed by a particular consultant in palliative care: not only for her personality but because she was one of six to be providing palliative care services for Lothian alone, which we believe has a population of something like 400,000 to 500,000. On the figure you give us in your document, the Government's workforce census shows 155 consultants in September 2002. If you work that out, it is very many less than six per 400,000. Does the Government have realistic plans to increase this? The lack of specialists in palliative care puts the service in particular areas back by a long way. I think I am right that, in my own area, there is one for 540,000.

Miss Johnson: We have figures that have been collated by the Association of Palliative Medicine, showing a total of 237 palliative care consultants in England in 2002, with a whole-time equivalent of 169. The total head count figure projected for 2008 is 358, which is an increase of 51 per cent. That will equate to a whole-time equivalent of 255. That is an increase of just over 50 per cent. So there will be both a head count and a real increase of about 50 per cent over the next few years. Looking at the 2002 baseline figures that we have, we are looking to 2015 - which I appreciate is a reasonably long time horizon - the overall view is that the number is likely to double over that period from 2002 to 2015. The increases are very important, because the consultants in palliative medicine are currently spread across about 170 hospices. There is also likely to be an increase in the non-cancer work. I am sure that will also be an issue that the Select Committee are looking at, namely the current focus of a lot of palliative care on cancer, when there are obviously huge demands that go beyond that.

Q317 Dr Taylor: The other amazing thing in Edinburgh was that the particular hospice we went to actually had NHS junior doctors on the staff. Is it possible to find out how many charitably run hospices in England have NHS junior on their staff?

Miss Johnson: I do not know the answer to that and we may need to write to you on such an issue. I am sure that we can supply the Committee with the information that you have asked for. If we have it available, we will supply it - put it that way. In response to some of the earlier points you were making, the end-of-life care initiative is also skilling up a lot of generalist staff. I mentioned, before you arrived, things like the district nurse training, the enthusiasm there has been for that, and the extensive enrolment in training. Obviously we are looking at the role of GPs and their surgeries generally, and of course a wider range of hospital staff. From my experience of the local hospice movement in my own constituency, I have been aware that people come in to be consultants through many routes, including general practice.

Q318 Mr Bradley: Perhaps I could go back briefly to the equity of provision, so that I am absolutely clear what the Government are saying. If we accept that hospices are part of palliative care and part of the packages that you may want to develop, are you saying that in areas where there is little or no hospice provision, whether for adults or for children, then there is government support for those to be developed - either directly through statutory provision or through support for the voluntary sector - and, equally, continued financial support for those hospices that are already in existence in areas that are part of the package of provision for that particular area? Is the intention to have an equitable distribution of care which includes the provision of hospice care, whether provided directly or indirectly?

Miss Johnson: The intention is to have equitable care, provided by whatever means is the best way of providing that, given the locality and the needs of the localities. I think that is an important distinction from the way you are putting the question to me. I am very happy to support equitable care. I think that is an absolutely crucial outcome and one we have to focus on, and keep focused on. As to exactly how that provision is to be determined - I am not saying that you are suggesting "one size fits all", but the one-model-fits-all approach is not necessarily the right way for every area to go. Therefore, I would not want to legislate for particular formations of things. What I would want to be sure about, and why we are setting clear standards and clear demands of the service, is that they provide certain qualities of outcomes, and a range of options and choices for patients and their families.

Q319 Dr Taylor: If I put the question the other way round, where would you see it as not appropriate to have any hospice provision?

Miss Johnson: I have already said that I think the measure is looking at what the provision should be in terms of the outcomes for patients, not in terms of specific aspects of the service. Traditionally, some areas have historically focused more on outreach work and less on hospices. I am not judging, without looking at the detail of those provisions, whether those are less good or better than the services that have been more hospice-focused. What I think that we have to do - and I hope this is one of the things that will come out of the Committee's inquiry - is to look at the sorts of balances which might be achieved; what the best available models are; and to look at how the future provision can build on what there is at the moment. I entirely accept that what there is at the moment is not a consistent, level playing field across the country. Obviously we have been starting from different places in different areas. However, that is not to say that an area that does not have as many hospices as another area necessarily has poorer provision nor that it necessarily has better provision.

Dr Ladyman: I am feeling left out! Can I have a question?

Chairman: By all means!

Q320 Jim Dowd: Perhaps one last attempt at this point that Keith has raised. I am getting the impression that you want to say, "No, we're not going to provide any more hospices or provide the mechanisms to provide them". You are shaking your head. Right, that is progress. I accept what you say about domiciliary care and providing more support and at-home services, but is it your view that a hospice, as an institution, as a building and as an establishment, has no value to add to the service?

Miss Johnson: No, not at all. I know my local hospice in my own constituency very well. Not at all do I think that they do not add value. They add huge value in all sorts of ways. It is not only in the bed spaces and what is provided by way of actual in-patient care, but also that the day care and the other work that can go on out of a hospice base are clearly very valuable. They are clearly providing a very good service from the many hospices around the country.

Q321 Jim Dowd: So it could be, if the circumstances were judged to be appropriate, that the Government would encourage the development of a hospice/hospices in areas deficient in that service but where it would add materially to the value of the service provided in terms of those towards the end of their life?

Miss Johnson: Yes, but the decision needs to be with local commissioners primarily, about what configuration of service they want, given the historical position that they are in, what their needs are, and how they are best to meet those. That might include a hospice; it might not include a hospice, or an extra hospice. Providing the outcomes are good and equitable for patients, then our objective is to focus on the outcomes. It is not to focus necessarily on a single model of delivery, but to accept that we already have a diverse pattern of provision in palliative care, and that that diversity and richness is likely to continue - the exact configurations varying from area to area.

Q322 Mr Jones: Perhaps I may now turn to children's palliative care. In the memorandum, the Department of Health states that, because the children's services evolved in different ways, "the underlying conclusion is that it would be unhelpful to set out a singular care pathway". Is it still anticipated that NICE will be issuing guidance on child and adolescent cancer services in February next year? If so, is it likely that this will reflect a range of different models of care?

Dr Ladyman: I cannot speak for what NICE are going to produce, of course, but, yes, they are going to produce in February. If I can combine a general answer to that question with one to the previous question, here is how I would expect it to work for children. I would expect primary care trusts to sit down with the guidance that is provided for them. For example, the National Council for Hospices has produced guidance on how to assess palliative care in the local area. I would expect them to look at that. I would expect them to look at the National Service Framework chapter on palliative care. I would expect them to look at the NICE guidance. Having looked at these frameworks, I would expect them to come up with a plan that meets their local requirements for providing the full range of palliative care: whether that is at home; whether that is for respite; however it has to be managed. I would expect them to come up with essentially an ideal strategy for how they are going to meet the needs of their local population. That strategy may be that they can identify the need for a certain amount of domiciliary care and a certain amount of hospice care. They will then look at where that hospice care might come from, who they can commission it from, and how close the local hospices are. It may be that they can meet all their needs and produce a strategy which meets all these guidelines, using existing resources and existing hospices - in which case, no problem. That is what they would expect to start to implement. On the other hand, they might identify a deficiency. This PCT that you are talking about, where the nearest hospice is 100 miles away - if they feel that is not appropriate for children in their area, they will have to start asking themselves the question, "How do we then commission that particular type of care pathway for those children who need that sort of care?". Then, if a hospice has to be developed in their local area to meet that need, they will have to ask themselves how they will go about making sure that hospice is developed, which partners they will put into the package, how they will fund the development of that particular service, and who they will commission it from. They will look at the voluntary sector; they will look at the state sector; and they will work out a strategy for making sure that all the pieces of the jigsaw are in place. The next question you are going to ask me is, does that mean the Government are going to encourage the development of hospices ----

Q323 Mr Jones: No, I am not going to ask you that question.

Dr Ladyman: ...and are we going to have a pot of money somewhere? No, they have got the money and ----

Q324 Mr Jones: Dr Ladyman, I am not going to ask you that question. I have worked out that I am not going to get an answer, so I will move on to a different one.

Dr Ladyman: I was going to give you an answer - but if you do not want it...!

Q325 Mr Jones: The question I was asking earlier was to do with the pathway of care, particularly with children and their becoming adolescents. They utilise different sorts of services. Would you examine whether the regulations that govern the operation of services might be better based on the pathway rather than on the service provider?

Dr Ladyman: The National Service Framework for Children is very largely based on pathways. The research that has been done in developing the National Service Framework has looked intensively at the different types of care pathway that children in different circumstances have to move through. Whether we are talking about the bit that is going to deal with children with long-term conditions and autism, or whether we are talking about children who have palliative care needs, we have been looking at how those needs develop and the sort of life pathway that they have to go through - and the different needs they have at different stages of that pathway. The needs of the toddler with a life-limiting illness are very different from the needs of an adolescent, for example, and the transitions between the different stages will be vitally important. They will have different needs at different stages. The family will have different needs at different stages. The carers will have different needs at different stages. And that is very much the way the National Service Framework is being developed.

Q326 John Austin: You talked about the kind of care that children with life-limiting and life-threatening illnesses need. In your evidence to us you have said that generally this care is provided by the paediatric community nursing teams. Some time ago, a previous Committee looked at the health needs of children and found very big gaps in the provision of children's community nursing services. I think that when we had the RCN in recently they were saying that the position was patchy. You have said in your evidence to us that something like 70 per cent of the country has access to a children's community nurse. That is different from saying access to a generic paediatric nursing service, is it not? To what extent do you think that there is a comprehensive provision of community paediatric nursing services in this country, particularly for children with life-threatening illnesses?

Dr Ladyman: We can write to you with more statistics if you want, but I think that probably the Committee would be best informed by waiting a short period of time for the Chief Nursing Officer's review of community nursing, which deals very comprehensively with these matters. It is almost nearing completion and we should be able to publish it in the not-too-far-distant future. It deals in very great depth with the role of community nursing, the role of school nursing, and the role of nursing generally in the life of children. You will see there that we are pulling together, under the Chief Nursing Officer's guidance, a strategy for dealing very much with the issues of equity that you have identified.

Q327 John Austin: So that notwithstanding the local decision-making and local priorities, you would believe, from the Department's point of view, that every area should have a comprehensive generic community children's nursing service?

Dr Ladyman: And what the Chief Nursing Officer's review does - I hope I am not giving away her secrets here and that she will forgive me - is to set a series of guidance for primary care trusts who are developing these services to follow. Again, it is another framework which they will be operating within, which will deal with the very issue that you raise.

Q328 John Austin: Many of these children have specialised healthcare needs. One of the issues which we raised recently when we had Mr Hutton before us were the general gaps in the commissioning of specialised healthcare services. Do you think that particularly affects children and those conditions which children may be prone to?

Dr Ladyman: It would be crass of me to say that we are equally good at commissioning specialised services everywhere, because clearly we are not. The primary care trusts are only a few years old, and local commissioning is something that has been developing and which people are getting better at all the time. They are also coming to terms with the different complexities that they have to address when commissioning services. It would be ridiculous of me to say that the commissioning of specialised services is equally good everywhere: it clearly is not. However, things are changing. First of all, the PCTs are getting better at it. Secondly, we are providing more guidance, in terms of the National Service Framework for Children - which you can see in those reports coming out, the NICE guidance, et cetera - within which they can work. So I think that these things are coming together; that it is getting better everywhere and it is becoming more equitable everywhere. Our motto in the Department at the moment is "Progress, not perfection". We are not claiming perfection, but we do think that progress is being made.

Q329 John Austin: Is there a specific role in this regard, in terms of commissioning of specialist services for children, for the Strategic Health Authority? Are they fulfilling that role?

Dr Ladyman: Of course there is a role, because these services, especially for children, have to be commissioned over quite considerable distances. One hospice will serve many PCTs. So clearly there has to be a role for Strategic Health Authorities in making sure that PCTs come together and are co-ordinating their commissioning services. How each Strategic Health Authority and their local PCTs will do that will be a matter for them.

Q330 John Austin: Are you satisfied that it is happening?

Dr Ladyman: I am satisfied that it has started to happen. I am not satisfied that it has yet reached where I would like it to be.

Q331 Dr Naysmith: One of the other areas - and you have already made reference to this - of the inequities that exist in this area is the historical relationship of palliative care to cancer. It is a group of diseases which is responsible for the death of no more than 25 per cent of the population, and yet something like 95 per cent of the hospice places are dedicated to all cancer sufferers. So that is obviously an inequity. However, it is worse than that. NICE guidance, when outlining best practice, has used cancer as an exemplar, and yet they are setting out guidelines for all diseases. The mapping of palliative care services is being done through cancer networks and, until recently, palliative care was indexed on the Department of Health website as a subsection under "cancer". Is it not true that existing services deal well with diseases with a relatively predictable trajectory, like cancer, and badly with almost every other disease?

Miss Johnson: First of all, we recognise that 95 per cent of all referrals are actually for cancer patients, and we think that is an issue for specialist palliative care teams. Secondly, we are making sure that all the National Service Frameworks, and indeed all the National Service Frameworks that are out, do have specific modules that actually relate to palliative care. While I accept your comment about where it was on our website, therefore, I think it is true to say that we are recognising that palliative care is wider and it needs to be related to all sections of the population, not simply to those with cancer; and particularly to patients with chronic diseases, where there are a lot of issues and where we need to recognise that there are a number of actions we can take. An extension of palliative care is one of the options. However, there are other options - like the work that is going on on the Expert Patients Programme, which has been highly praised by those who have been involved in it - supporting patients to self-manage their conditions, and things like disease management with specialist nurses and a wider range of multi-professional, multi-disciplinary teams, supporting people. What we are doing is developing case management and support for people who have chronic diseases. Obviously, part of that needs to be the palliative care aspect for some of those diseases and conditions, where that is also relevant.

Q332 Dr Naysmith: Do you think that you will be able to alter the case mix and bring in conditions such as heart disease, kidney failure, chronic obstructive airways disease - all of which can require palliative services and possibly hospice services?

Miss Johnson: Yes, indeed.

Q333 Dr Naysmith: Most people do not think that there is a lot of evidence that that is going to happen.

Miss Johnson: For example, we are currently working up Part 2 of the NSF on renal care and we have had quite extensive discussions and consultations on end-of-life care with various stakeholders, including Mike Richards, who is here again today, and Ian Philp, National Director for Older People. If people decide that they are not receiving ongoing care, the issue of palliative care for renal patients is an important issue. We want to make sure that they can deal with that, that they will be comfortable, and that they are supported in their decision and in the quality of their end of life.

Q334 Dr Naysmith: I accept clearly that there are other ways and sometimes better ways of dealing with chronic conditions, and putting resources into that might be a better way of dealing with this because, for a number of these diseases, as you have just said, there will be end-of-life issues. One of the reasons it has been suggested to us that this inequity may arise is because of the way hospice services are funded, in that we use care episodes as a basis for funding these services. Of course, that would tend to give a bias against situations where people need care for longer rather than for relatively short periods of care. Do you think that that is a contributory factor? If it is, do you think that we can do something about it? What would you suggest that we could do about it?

Miss Johnson: One of the first things to say is that I think there are some positives coming out of the fact that it has historically been linked up with cancer, because cancer has increasingly focused on the needs of patients and their families, and the provision for cancer patients in many areas is excellent now - on the basis that often a lot of work has been done, not only by the Government and staff but also by the patients' groups in those areas in focusing the service. Out of that on the palliative care side, therefore, has come a much stronger focus on a lot of good practice - things like the Gold Standards, the Liverpool Care Pathway, and other areas - where that practice will transfer across and will, as it were, seed the development of a lot of non-cancer palliative care. So I think that there are some positives out of that. In terms of payment, the funding mechanisms are in transition and will be changed for the voluntary sector by 2008. There will be the introduction of payment by results. That will have some advantages here, providing we recognise that we have needs in terms of palliative care funding that are recognised by the payment-by-results formulas, as it were, which are still in development and ----

Q335 Dr Naysmith: That formula will have to recognise that some of these other diseases will have much longer timescales.

Miss Johnson: Indeed, but the advantage of it is that the money will follow the patient - which is a big advantage in terms of making sure that the funding is there for what people need. We are looking not only to have simple formulas for standard arrangements, but recognising that some specialist arrangements will need to be put in place for parts of the service where a simple formula will not work for a particular area, and perhaps a more complex formula - recognising shorter and longer stays, for example - might be necessary. And obviously this will be one of them.

Q336 Dr Naysmith: Would it be fair to say this is an area where you feel that we need to do better, in terms of diseases other than cancer? As you yourself said, there are often excellent situations for cancer but ----

Miss Johnson: Indeed, and that is one of the reasons why we are focusing a lot on chronic diseases and chronic disease management, because we think that it is one of the big areas, one of the most important priorities for the healthcare system in the future. Many of us will live longer; many of us will develop some of those diseases and conditions which are increasingly associated with people getting older: not exclusively so, but there is a greater prevalence of them in the population as a whole as we all live longer lives. We need to reflect those needs and make sure that they are picked up.

Q337 Dr Naysmith: You are raising the subject of dementia and the various ways of dealing with dementia. There is a huge lack of really good support services for many dementia sufferers. I do not know if you want to go into that.

Miss Johnson: I do not know whether Stephen wants to talk about it from the older people's point of view in particular.

Dr Ladyman: Dementia is an important issue and long-term care for dementia sufferers is something that we have to keep working at. It is provided in a range of settings. It is provided in National Health Service settings; it is also provided in private care home settings and, increasingly, I am glad to say, in people's own homes or in extra care settings now. So it is a big and complex subject. Maybe it is something we want to leave for another day.

Dr Naysmith: I just wanted to point that out as an area where I know there is lack of provision in a number of areas.

Q338 John Austin: Clearly I welcome the developments of the extension of palliative care to conditions other than cancer and, as Doug Naysmith has pointed out, we have certainly had evidence on renal failure that the provision of palliative care does enable patients to exercise real choice about whether they go on dialysis and whether they stay on dialysis. They can make real choices. I recognise the need to change the basis of funding but, if these changes are to come about, we need to take the hospice movement and the voluntary sector palliative care providers with us. You have mentioned significant changes that are forthcoming in the method of payment and remuneration. To what extent is the consultation with the voluntary sector providers going on? What has been their reaction? I am sure you would agree that it is important that they are carried with you, rather than causing some conflict.

Miss Johnson: What we need to do is to work very closely with the sector in developing the standards, the formulae, that are going to be used, for payment. It is a relatively early stage still in the discussions. The sector as a whole is only expected to transfer across fully by 2008. As you will appreciate, there is quite a lot of discussion to go on but the National Partnership Group is currently considering how best to implement a national tariff and payment by results. Obviously, they involve the key players here and provide an opportunity for us to have a forum in which the issues can be discussed with those who have expertise to provide to people in deciding the best way ahead.

Q339 Mr Burstow: In the answers you have just given, you have indicated the direction of travel, which is to widen the availability of palliative care to other non-cancer groups, which is obviously a very welcome thing. Could you give us some idea of what estimates the Department has made as to the speed of travel in that direction, how soon we might see a shift occurring, and what sort of estimates you have put on the cost of expanding the services that will be necessary to carry the weight of the additional people who would then become eligible for access to palliative care services?

Miss Johnson: I have already indicated in some of the workforce areas what the future figures are over the period to 2008 and beyond to 2015. It might have been before you were with us. In general, we do not have a figure to put in front of you on this. I am not aware that the Department has a figure. It would be very difficult to produce one because one of the things we need to do is to work with the PCTs in carrying forward the local commissioning of services which will lead to the provision that we are looking for in the future. We know that there are patchy provisions already. Some PCTs may be providing things like 24 hour district nursing cover and other general practices are not. It is not an even base from which a simple, national calculation can easily be done.

Q340 Mr Burstow: I can understand and appropriate that and that patchy nature is obviously an issue in terms of ensuring equity of access which we were talking about earlier on. That would imply that that is building up to a level that would enable us to have a system providing primarily palliative care still for the 95 per cent of people with the cancers - 25 per cent of people who have cancer - but what I am interested in finding out is whether or not the Department has a programme of work that will enable it to make an informed assessment of the cost of rolling out services beyond cancer to other groups and over what sort of timescale, given workforce constraints, that would be achievable.

Miss Johnson: We are setting standards through the National Service Frameworks and through NICE in terms of standards. We will be looking to make sure obviously that those are being implemented at a local level. Until we have all of those in place and until we have a better understanding of exactly what the baseline is, the overall financial implications clearly cannot be detailed, but clearly record amounts are going in by way of annual growth into the NHS. Most of that money is going directly to the PCTs to use for local purchasing, as you know, and we would expect quite a lot of that to come out of the growth that is already predicted and promised to the service in terms of increased funding.

Q341 Mr Burstow: Setting new standards is, if you like, stage one. Maybe we should begin to work out what the additional workforce implications of those standards would be. What I am not clear about at the moment from the answers I have heard is whether or not there is a programme that goes beyond the standards to pricing up the consequences in terms of expansion of training places, recruitment of additional staff and the other costs associated with providing your ambition of a palliative care service that goes beyond just providing for cancer.

Miss Johnson: What we have done in various areas is clearly already to put funding in to increase the skills and training of the workforce. The 12 million that was announced in December might not sound a huge amount of money but when that is all being used on training it is a very extensive amount of money to provide additional training across the workforce, to provide a greater range of skills in our existing workforce and to make sure that those skills are deployed to the advantage of patients. What we are looking for in the future is to make sure that patients are receiving the level of service which is in line with the standards that we will be setting. We do not have a set of figures, which is what I think you are looking for, which say this amount will be X amount; that amount will be Y amount.

Q342 Mr Burstow: I am more interested in whether there is a sense of a programme of work within the Department that ultimately would inform the Department about the cost consequences of those standards.

Miss Johnson: There is a programme of work obviously to achieve the improved standards and that programme of work focuses on things like making sure that, where we identify things like, for example, skills mix gaps or opportunities to broaden the skills in a way which will help to support the service, we are putting the funding in. Altogether, across palliative care, together with the NOF funding, £119 million extra has gone in which is a huge amount of extra gone in over the last few years to support palliative care in its various manifestations. That work is going on. I am sure it will continue to go on. Also, we must recognise that a lot of the funding is at PCT level and it will be through skilful and effective use of those funds in line with the national standards and national guidelines that will get the achievements that we are all looking for.

Q343 John Austin: Can I come to the issue of equity? We have had evidence that the majority of ethnic groups are under-represented amongst the persons receiving support in hospices and in palliative care generally in the community. With the hospices, there are some clearly explainable reasons for that. Many of the hospices represent a particular cultural, religious or faith ethos which might be not appropriate or relevant. Is there anything which you can do through your funding mechanism to ensure that palliative care services generally are accessible to all members of the community?

Miss Johnson: One of the things we want to do is to increase access generally to services. One of those things is to recognise that some groups find it more difficult to access services than others. We cannot assume that it is equally easy for all groups to access a service in a particular way. I think increasingly that has been recognised and taken up in the diversity of the way in which services are being provided. Increasingly, we try to make services available at as local a level as possible with as much integration as the various parts of provision. A good example just recently, on a tiny scale, is the fact that there are integrated equipment stores, for example. This might sound like something trivial but it is something major in terms of the impact of getting equipment out to patients or people in their own homes, for example, to support them being there quickly and easily by a number of different professionals working to support them. The whole integration of things, things being more local to people wherever that is possible, and focused on what they would like to receive by way of support or care in the way in which they would like to provide it is the vision which we are trying to implement as fully as we can in what we are doing.

Q344 John Austin: Hopefully consultation is going on at a local level with black and minority ethnic communities. Is the Department itself engaged in that kind of consultation at a national level?

Miss Johnson: There are specific things like extra funding that have gone into certain groups to do some of the work that I think you are talking about. Also, I know from a lot of the work that I have done on health inequalities that there is a lot of work going on at a local level with particular communities who have particular health needs, often led by those within the communities or working very closely with those within those communities on getting the provision right. There are particular needs on things like coronary heart disease, diabetes and other chronic conditions. That work is going on on a local basis often within the national standards and frameworks. I think that is probably the best way for most of it to go on but we will and are increasingly checking on the progress on things like health inequalities at a PCT level. That will pick up a lot of the issues over the next few years about what progress is being made on this particular aspect of health inequalities as well as on a wider platform of health inequalities.

Dr Ladyman: Shifting the balance of power is only a few years old as a policy. Empowering local areas to make local decisions has not been in place for that long. PCTs have a clear responsibility to reflect the needs of their local communities, including the black, minority, ethnic communities, but much of the infrastructure that the Committee is talking about at the moment was planned and built well before shifting the balance of power came along. Over a period of time, we would expect to see the strategies being put in place, whether it is for adult palliative care or for children's palliative care, to reflect the needs of local communities much more clearly as a result of the decisions being made locally. So far as black, minority, ethnic issues are concerned generally, the permanent secretary, the chief executive of the NHS, Sir Nigel Crisp, has recently announced that the equality for black and minority ethnic communities within NHS services is going to be one of the priorities across the piece, not just the palliative care, but looking at all the ways services across the board are being delivered.

Miss Johnson: Not only have the PCTs only been in place for a little time but I think we have to recognise that there is a huge potential value in allowing them to develop and mature and do the sorts of things that can really only be done on the basis of local knowledge and understanding. We are making rapid progress along that path, considering that they are very young organisations. The danger is that people wish to have a simple, national answer to things which cuts across the thrust of that and does not allow the value of that development to really develop and show its true mettle. I think it does have huge potential. We must not be cowardly in giving it a little bit of time to make sure that those developments really can show the outcomes for people on a local basis that I think they really can.

Q345 John Austin: I think that is absolutely right. They have to be locally designed and owned. There is not one, simple solution for every community and area, but there are things that we can learn from those who have gone through that process. I wonder if you can point the Committee in the direction of any PCTs or areas where you think there is some very good work being done, pioneering work, in rolling out the services to black, minority, ethnic communities.

Miss Johnson: I mentioned packages of equipment. The Beds and Luton Community Equipment Service, for example, is doing a fantastic job on delivering within four hours if necessary a package of equipment to enable somebody to return home from hospital if they wish and, when it is no longer necessary, they will take the equipment away in a careful, sensitive way. Those are the sorts of developments that are making a huge difference. When we think that we have, for example, from the work that has gone on on delayed discharge improvements, the equivalent of eight extra hospitals freed up by that work in terms of the numbers of beds available extra per year, that is eight extra hospitals as it were out of that. I think we can see there is a huge potential for a better use of some of the money by working on some of these really quite simple things that might appear to be not rocket science but have never somehow happened in the past, but which are now happening, and which will not only lead to better outcomes for patients but a much more effective use of the money that we are putting into the health service as well.

Q346 Mr Amess: There can be little doubt that when someone has cancer diagnosed it can be traumatic for the person concerned and obviously their relatives. When treatment is delivered, that can be very stressful. I suppose not only the patient but their loved ones are looking for some sort of reassurance and communication is absolutely fundamental. We were given a memorandum from the Health Service Commissioner for England and she suggested that the lack of effective communication "is the most common cause of concern among patients and can have a devastating effect." What steps are the government taking at the moment to be more responsive to the views of carers and patients on this specific issue of communication?

Miss Johnson: I am not sure whether you mean communication about things as things go on or communication about the initial diagnosis.

Chairman: As things go on.

Q347 Mr Amess: As the disease progresses, what treatment is available and the anxiety if the pain is not controlled in the wee hours of the morning. If somebody says, "Help", what can be done?

Miss Johnson: I think that is where this much greater spread of skills and a different mix of people available to support people, for example, in their own homes is absolutely crucial. In a way, what you are talking about there is not really particularly, with respect, about communication. It is about responsiveness to what could be a rapidly developing and difficult situation.

Q348 Mr Amess: When the relatives might have a meeting with whoever is charged with looking after the patient, there does not seem to always be preparation of what will follow. For instance, hair will fall out. You will lose appetite. I mean communication in that sense as well.

Miss Johnson: In some areas we have this very well done and in other areas I am sure there is progress to be made. I would not wish to pretend again that we have perfection across the board but in many areas, particularly in relation to cancer again, which I appreciate is not the only issue by any means in this inquiry, we are doing very well in some areas, absolutely excellently indeed in some areas of cancer, rather than some geographical areas. We are trying to get to the same position for all cancers including some of the less glamorous, less commonly occurring ones too. The support is there in many areas but there is an increasing focus on communications training work as well with doctors, with those who are working in the community and in terms of general support, for example, in care homes as well. Macmillan, supported by the Department of Health, have recently issued a foundation in palliative care, a programme of facilitated learning for care home staff. There are a number of initiatives going on across the piece. That piece involves principles that would be most beneficial to care home staff like communication, pain and symptom management, which you also mentioned, bereavement care and reinforcing the principle that dying people's wishes must be valued and respected. That can be applied across the piece, whether it is focused initially on cancer patients or not. Obviously, that is Macmillan's broad focus but it will, in a care home setting, apply potentially to any resident that the care home staff are supporting. We do recognise that more communication skills need to go on. Doctors have increasingly recognised that communication skills are a crucial part of their job and need to be developed. A lot of the good practice that exists in the area of cancer again needs to be spread more widely, both across the remaining areas of cancer provision and much more widely into some of the other services. If you talk to people who are providing, for example, specialist nursing for some of the chronic conditions, there are a lot of people now trained who are providing, sometimes through the voluntary sector and through some of the national organisations supporting people, absolutely excellent standards of support for patients. I think it is those model that we need to make sure are main streamed across the NHS.

Dr Ladyman: It is about identifying best practice and making sure that everybody is following it, especially with children, and realising that we need to learn to communicate with children better. Clearly, you will often be communicating with parents or guardians in this regard, remembering that, with the initial communication, they will probably be shell shocked. They will not take it in. Best practice is about making sure that there is somebody for you to go back to when you have had a chance to absorb the message and to go through all those things that you need to be aware of and to spend some quality time. That almost certainly will not be the doctor, after that point. It will probably be a specialist nurse or a counsellor, somebody with the time to go through these issues with you, making sure that there are other opportunities. NHS directives seem to be increasingly popular with people who just have an immediate question in the middle of the night about something that is happening and want that little bit of advice and reassurance. It is about identifying best practice and making sure everybody is following it. Increasingly, in terms of children's care, it is happening but you can always do more.

Q349 Mr Amess: If you cannot respond to this first question, perhaps you might write to the Committee. Last year, a briefing paper was published by the Association of Palliative Medicine and the National Council for Hospice Specialist Palliative Care Services. In it, it said, "The law in its present form needs no change for comprehensive and effective management of distress and agitation." I am now talking about when the relatives become agitated because their loved one seems to be in pain. "This includes high doses of analgesia and sedation at any stage of disease which is safe and effective if given by personnel properly trained in specialist palliative care. Otherwise, it is misleading and mischievous." These are the critical moments when the patient is in pain. It is absolutely essential that the medication that is administered is in complete accordance with the guidance. I do not know if the Department has had a chance to look at this and whether you could comment.

Miss Johnson: I am sure the Department has but I certainly have not had a chance to look at it. I would be very happy to send you a comment.

Dr Ladyman: The Expert Patient Programme is something that would be of importance there. We are increasingly looking at what opportunities there are for self-medication, but it has to be done in accordance with the medication programme. There are other schemes as well. One was piloted, off the top of my head, I think it was in the Portsmouth area - certainly in that part of the country somewhere - where a home care company was commissioned to deliver a lot of this medicine for people at home, as a way of providing an extra tool in the armoury for people providing palliative care.

Q350 Mr Amess: The doctor/patient relationship, when it is not good - and this does happen - is most frequently strained when the patient has limited confidence in their doctor's skills or motivations. Interestingly, this mistrust is a common complaint of those seeking euthanasia and includes poor care, inadequate diagnosis of treatment and poor skills in symptom control. How is the government working with the palliative care sector to counter this unfortunate mistrust that happens on occasions?

Miss Johnson: Euthanasia is not legal in the UK, so far as I am aware. This is not a subject that has come across my desk.

Q351 Mr Amess: It is something that bubbles up in the House of Lords from time to time and never reaches the air.

Dr Ladyman: In terms of the training of doctors, you will need to take evidence from the royal colleges but I can tell you that a huge, significant part of the training of doctors is about communication techniques. Clearly, it goes wrong from time to time. We all know how conversations can go wrong because they are bipartite. There is somebody talking and somebody listening. If you are not in the right mood to listen and you do not like what the other person is saying, the conversations frequently go wrong. That is an issue which no amount of training can deal with completely. All we can do as a Department is make sure that we are working with the royal colleges and others to make sure that everybody is being properly trained, that everybody understands what best practice is, that if people go away from conversations unsatisfied they have another opportunity to go back to either a different person or a different structure or the same person and get another bite of the cherry until they understand it. Let us not kid ourselves that it is ever going to be 100 per cent right, especially when people are seeking a procedure which, as Melanie says, is illegal and which the doctor is not in a position to grant, even if he or she wanted to.

Miss Johnson: On the subject of communication and skills in our doctor community, not in relation to euthanasia issues but in relation more generally, there is a discussion that it would be useful to have possibly with those who are responsible for postgraduate and doctor training. Talking to them might be an avenue in which some of these issues could be explored. The Committee will be aware that the Department does not set the content down. It is set down by the royal colleges and by those responsible for the postgraduate training arrangements as well. There is an increasing recognition that palliative care is important in all of this. Could I make one brief point that relates to the question of inequalities and also the communication things which I should have made earlier? Cancer BACUP last year launched a cancer in your language service which offers 12 additional, national, free phone help lines specifically for speakers with the most common ethnic minority languages. That gives you an interpreter for the language who can link up with a cancer BACUP nurse and they are able to answer questions on any of the cancers for example. That is a sort of development again which is very positive in providing a lot of extra support.

Q352 Chairman: One of the issues where this Committee has been consistent over two separate Parliaments and two separate memberships, except for two or three of us, is the need for integrated health and social care in the system. You have heard me talk about it previously. What has come across very strongly in this inquiry is the real frustration when you have somebody who may be returning home to die and there is, in the last few days of life, an argument between health and social care as to who is responsible for providing a service to care for that person and to support their carers in the process of them dying. I think it is frankly inexcusable that we cannot, when a person is dying, offer a service that does not have these boundary disputes. I do not know what we will recommend but I have a good idea. You have a good idea but is it not about time we buried the hatchet and had a proper, integrated system where there is not an argument between suits on both sides of the fence as to who is going to pay for this and not an argument about whether the service is means tested or not or whether they are health or nursing care? It is ludicrous, particularly when a person is dying.

Dr Ladyman: You are absolutely right and that is exactly why we have started the process of writing a new vision for adult social care. I hope the Committee will have some comments that will feed into that. You need to produce your comments very quickly to get into the first draft of it. One of the things I have made absolutely clear in setting out my ideas about what needs to be in that vision is this issue of seamless services. The person receiving services does not give a hoot whether they are being delivered by the local council or by the NHS. They just want their services and they want them delivered efficiently with high quality.

Q353 John Austin: They do care if they are charged for the service.

Dr Ladyman: They do care if they are charged for the services and that is why it is important that we deal with the issues around NHS continuing care, get the criteria sorted out and get the assessments carried out properly. That is why we have introduced the single assessment process to make sure that everybody is automatically assessed now for NHS continuing care before we determine that they have social care. There is a whole range of issues there that the vision has to take into account. I absolutely agree with you but do not, on the other hand, just think that there is a magic wand that you can wave to sort this out, because there is a part of the United Kingdom where health and social care still are in one structure and that is Northern Ireland. When I speak to people from Northern Ireland who do all this work there, I am told it is even worse there than it is in England. What it comes down to in many cases is the way individuals are working, the way individual teams are working, the way people's attitudes are to partnership working, what people's motivations are in delivering services. It is not entirely about structures. One of the things that we are going to have to address is: is the Northern Ireland model the right model? Is the care trust model the right model? Are Health Act flexibilities the right model? Is there some other model that we have not explored yet that is more appropriate. Those are the things that I very much want the vision document to address and encourage anybody individually or as a Committee to contribute to that consultation.

Q354 Chairman: Perhaps you would be good enough to look at two previous reports that we have produced which recommended to government an integrated health and social care system. The real worry is that, when you are dealing with a dying person, you cannot differentiate where the nursing care stops and social care begins and people are having to do that. I would challenge you to tell me what is the division.

Dr Ladyman: With the greatest respect, if somebody is dying in that way they are eligible for NHS continuing care and social services are not in the picture. The NHS will pay the bills and do all the work.

Q355 Chairman: Perhaps the message needs to be put across because certainly we have had examples of witnesses sat at the table saying that these boundaries are still happening and, to me, it is long overdue that we fundamentally change our approach because I think it is inexcusable.

Dr Ladyman: I would welcome evidence as opposed to anecdotal evidence that it is still happening because it does need to be rooted out. That is why we are going through the process, following on from the Coughlin judgment, of making sure criteria are reviewed.

Chairman: It might be helpful for you to study the record of our witnesses because the evidence came from them.

Q356 Mr Burstow: The Coughlin judgment is a good point to come on to because one of the things we have had in evidence on this inquiry has been about the way in which the eligibility criteria and the assessment tools that are being used up and down the country are inconsistent, one with another, to the extent that it means that in one part of the country may be eligible for NHS continuing care at an earlier stage in the trajectory of their condition compared to another part of the country. Is this something the Department is alive to? What work is the Department doing to ensure consistency of NHS criteria for access to NHS funding?

Dr Ladyman: It is absolutely something that we are focused on. It is something that we are looking at very closely. With the greatest of respect to the witnesses who told you that, they may be talking about historical problems but they have no way of knowing whether the work done since the Coughlin judgment has fixed the problems yet, because nobody has done that work. The eligibility criteria in the different strategic health authority areas has only just been reviewed. They have only just been pulled together. They are now going through the process, as you are aware, of assessing people against those criteria. Until we have carried out an analysis of how that is working, none of us will know whether it is consistent across the piece.

Q357 Mr Burstow: Are you saying the Department is undertaking its own evaluation of both the criteria and the assessment tools that are being used?

Miss Johnson: Strategic health authorities have recently reviewed the criteria and they are checking that with their advisers.

Q358 Mr Burstow: I know that is happening and it is very useful to be aware of that but what I wanted to clarify was whether or not the Department was in turn looking at and comparing SHAs' criteria and the assessment tools that PCTs are using to translate those criteria into meaningful terms.

Dr Ladyman: There are two pieces of work, in my view, that have to be done. First of all, we have to look at the criteria. Each of those strategic health authority produced criteria is based on guidance from the centre as to what they are supposed to look at. They ought not to be diverging too greatly. We need to look at that to see whether they are diverging. I have asked officials to start doing that analysis. That is underway at the moment. Secondly, we have to ask ourselves how those criteria are then being interpreted locally and whether that is creating any divergence. Of course, the best way to do that would be to look at the assessments that are being made as a result of those people who have asked for a fresh assessment as a result of the Coughlin judgment. That is still ongoing and, yes, we will be looking at that. We will be looking at those figures as well and coming up with a view as to whether we are getting consistent answers everywhere. That work is not completed yet.

Q359 Chairman: To come back to the answer to me earlier on about the agreement that the NHS will fund somebody's care who is dying at home, information passed to me is that in practical terms, in a part of west London that we were aware of, merely dying does not qualify necessarily for NHS continuing care. You have to be dying fast enough - in other words, within two weeks. This is the policy since April adopted in that part of west London. That, to me, does not address the point that I was making earlier on. How do you determine whether a person is going to die in two weeks?

Dr Ladyman: First of all, you bring that evidence out and I am not going to comment on the specific example because I do not know whether that is accurate or not.

Q360 Chairman: To be fair, we will get back to you with more information.

Dr Ladyman: I agree with you, on the face of it. That would be ridiculous. We have just said to strategic health authorities that we do not expect there to be a time limit on palliative care. We have asked them to make sure that nobody is setting time limits on palliative care. They have assured us that nobody is.

Chairman: It would appear to be happening and we will provide you with more information.

Q361 Mr Burstow: To go back to the piece of work the Minister was telling us about just now, the piece of work evaluating the criteria and so on, has that work been completed and, if so, is that work that can be made available to the Committee?

Dr Ladyman: It has not been completed yet, no.

Q362 Mr Burstow: It has not been submitted to ministers?

Dr Ladyman: I only asked my officials to start doing it fairly recently, so it has not even been submitted to me yet.

Q363 Mr Burstow: The Health Service Ombudsman published a report well over a year ago which made a whole series of recommendations, some of which your colleague has already referred to in terms of the processes SHAs have been going through. Since that report, there has been a whole series of further referrals to the Health Service Ombudsman, some of which appear not just to deal with the criteria that were drafted pre-Coughlin, but also criteria that have been published post-Coughlin. Some of those appear to have had findings in favour of the appellant, not the health service. Surely that would imply that there are still serious problems with the criteria that are being used by the NHS?

Dr Ladyman: You may be talking about a judgment in the Cambridge area. That was misinterpreted in the media.

Q364 Mr Burstow: That is not the one I am referring to. I am referring to those where, more specifically, it is dealing with continuing care in care home type settings.

Dr Ladyman: I am not aware that the Ombudsman has made any judgments about any of those issues that affect the legal position or the strategy. Of course, there have been findings that people did not apply the criteria that were in place appropriately. I am not aware that there has been any finding that suggests that any of the new criteria do not meet the needs of the law.

Q365 Mr Burstow: Do you not think some people outside of this Committee will find it very strange that a minister will come to this Committee today and say that he has just commissioned work on this issue of continuing care criteria, years after the courts made some very clear rulings, a year and a half after the Ombudsman made a very damning report? Is it not the case that the government has been very slow to act?

Dr Ladyman: First of all, it is not years. Secondly, we set time scales for the strategic health authorities to review their criteria and come up with criteria that met acceptable guidance. Then we have given them another deadline by which we expected them to have made progress in reviewing the local cases as to the outstanding cases. Of course, it has always been intended that we would analyse that process. I am very concerned about the way the process is working and I am determined to make sure that it is working right. For one thing, we have made a commitment that everybody who has had financial loss as a result of poor judgments in this area will be compensated. It falls to me to make sure that those decisions are taken as expeditiously as possible and everybody gets the money they are entitled to as expeditiously as possible. This is ongoing work and I have no doubt that, as soon as we have the work available, we will put it in the public domain and you and your parliamentary questions that you ask me on a regular basis will force me to do that, even if I was in any way reluctant to do it.

Q366 Mr Burns: It would be nice if we got less holding answers from you.

Dr Ladyman: Unfortunately, I can only give holding answers when we do not have the completed work yet. As soon as we have the completed work, the answers will be made available.

Q367 Mr Burns: It is extraordinary, on that narrow point, to get a holding answer when you ask for hospital waiting list figures on a Wednesday that were published by the government the previous Friday.

Dr Ladyman: You and I have an ongoing conversation about the timing of these questions. Unfortunately, data is often available to local acute trusts and primary care trusts.

Q368 Mr Burns: And the NHS Executive.

Dr Ladyman: It belongs to them and they give it to us at the centre and are shifting the balance of power for publication on a particular date. Although they may wish to publicise it before that date, we are not allowed to.

Q369 Mr Burns: You have missed the point. You, as the Department, published the figures on the Friday and the next following Wednesday you give me a holding answer on that information.

Miss Johnson: If they have been published, why have you been asking the question?

Dr Ladyman: I think that was something that happened about six months ago and you got a written apology.

Q370 Mr Burns: Can we get back to palliative care? You rightly said that you wanted everything to be done expeditiously and quickly. No one would disagree with you but there is a degree of concern, particularly arising out of the Health Service Ombudsman's inquiry, where it was determined and she said - you backed it up - that SHAs throughout the country should review all the cases from 1996 as quickly as possible. You set a deadline of 31 March this year. It is now late May. That deadline has been missed. It would seem, certainly from some of the figures that I have been given by some strategic health authorities, that the pace of carrying out these reviews and assessments is going remarkably slowly, which is contrary to what you want, what the Health Service Ombudsman wants and what is in the interests of natural justice. What are you doing to try and expedite this matter? What have you been doing in the run up to the 31 March deadline and when do you expect these assessments to be completed?

Dr Ladyman: First of all, we have been very careful to remind SHAs of the deadline and of their duty to get these things reviewed as quickly as possible. I was as disappointed as you that some SHAs were not able to complete by the deadline, so we have gone back to them to ask why.

Q371 Mr Burns: Is it not all of them?

Dr Ladyman: Let me just finish. The messages that I am getting at the moment, which I am pushing back on and trying to explore with them, are that what happened was the publicity around this whole issue has meant that new cases appeared. A lot of new cases appeared a lot more quickly than they were expecting them to appear and new cases are still appearing now, right up to the deadline. Were it not for the fact that these new cases had appeared and added to the workload, they are claiming that they would have completed by the deadline. The overlap of the deadline is a result of new cases they were not aware of coming out of the woodwork. I am having that explored as urgently as possible to find out whether that is a legitimate excuse for why it is delayed. Like you - I will be honest with you - I ethnic minority embarrassed by the fact that we have not been able to publish this because I was given assurances that we would be able to publish the analysis of the judgments on time. I am surprised and disappointed that we have not been able to do it. I am determined we will do it as quickly as possible.

Q372 Mr Burns: When do you think as quickly as possible is realistically?

Dr Ladyman: I really do not want to be pinned down to a date now but I am quite happy to do my best to work out a date for you in the near future and to write to the Committee and let you know.

Q373 Mr Burstow: When you write to the Committee, could you set out for the Committee the precise nature of the work that has been commissioned, which pieces of work have been completed and which pieces of work are still outstanding on this whole issue of continuing care?

Dr Ladyman: I will try to be as helpful as possible.

Q374 Dr Taylor: We have touched on delayed discharges briefly but I want to go back to those. I am delighted to hear that integrated equipment stores are working and are getting equipment out within four hours, which is absolutely brilliant. Delayed discharge in palliative care is absolutely crucial because these are the people who do not perhaps have many days left. To avoid them is crucial. When we did our inquiry into delayed discharges, you may remember some of us did not really like the idea of the financial penalties. Because there are financial penalties for delayed discharge from acute care but not from this sort of centre, is there any suggestion that people in palliative care in the more chronic settings are being penalised because more efforts are going to get the acute care people out, because of the fines they will face if they do not?

Miss Johnson: The legislation still puts all the health and social care partners under a statutory duty to provide appropriate care. Obviously, nothing has changed about that basic duty. The intention has always been to extend reimbursement to all the patients following consideration of the benefits for each patient group. We have engaged with Help the Hospices to get an idea of the impact on hospices of delayed discharges and how many patients are affected. Help the Hospices is currently working with the Hospice Social Worker Association to identify five or six hospices to undertake a data collection service -- that, I understand, commenced in March - so that we can get a better picture. Obviously, when we have that picture, we will reflect upon it but certainly the intention is not to have this effect. We are not clear whether this effect is being had or how extensively it is being had but we are collecting information to assess.

Q375 Dr Taylor: We have certainly had examples where there have been tremendous delays in setting up the necessary meetings, to say nothing of the equipment. Do I gather it is the government's intention to consider bringing in fines for delayed discharges in other sections, other than the acute care sections?

Miss Johnson: I think we are more focused on making sure that discharges happen from all sectors equally effectively, effectively for the patient in terms of being able to be discharged to wherever they need to go as quickly as they can be and obviously in terms of the use of hospital resources as well. I mentioned earlier on that the whole delayed discharges work has led to the equivalent of eight extra district general hospitals as a result of more rapidly reducing delayed discharges. That is a phenomenal outcome and it is to the patient's advantage too to be in that position because they are going more rapidly to the setting which they really should be in.

Dr Ladyman: It is not entirely our choice because I think I am right in saying that to extend delayed discharge, as Melanie says, it has been such an outstanding success, we are bound to be looking to where we can extend it to, but we have to have parliamentary permission to do it. It would be a matter for debate and, I think I am right in saying, negative resolution but we certainly have to come back to the House for permission to extend it to other areas.

Q376 Dr Taylor: You might get umpteen extra hospices if you instituted it in the hospice world.

Miss Johnson: Equivalent, yes indeed. There are all these potential gains to be had out of the much better working. At the end of the day, it is not just about the better use of resources. At the end of the day, it is about the feelings of the patient and how much better that is. We need to make sure that we maximise it.

Q377 Dr Naysmith: I know you have covered the position a little about lack of consultants in this area and you have also dealt a little with communication and the need for better communication. In your memorandum to us you said that many health care professionals who care for the dying have received little or no postgraduate training in palliative care and some, especially more senior staff, may not have received any training before registration at all. In the course of the inquiry, other witnesses have also highlighted this issue and Professor Richards told us that training in palliative care needs to be part of GPs' continuing professional development. Do you agree with that and do you think it is sufficient or should such training be mandatory and become a clearer requisite for revalidation?

Miss Johnson: We obviously do not set the curriculum for either undergraduate or postgraduate training.

Q378 Dr Naysmith: Do you think it is something you might want to press for so you can make your views known?

Miss Johnson: We certainly would hope to see that there is training available for GPs and certainly post-doctoral or post-graduation training available. In terms of what is possible to fit in for doctors in training as undergraduates, clearly again the same issues exist as for many other areas. It is a question of how many skills can you usefully fit in. How many of the skills that are missing are things that are more generally applicable and so would be of a wide benefit across a whole range of different engagements, as it were, between doctor and patient? How many of them are very specific to a particular area and therefore how much you can expect people to undertake in a given programme of training over a period of years? There are questions there that it would be best to engage with the royal colleges on, in particular. The regulation of postgraduate training for general practice is going to be soon with something called the Postgraduate Medical Education and Training Board, which I understand runs under the acronym of PMETB, which is a lot easier to say than that mouthful. We think that it is difficult for GPs to develop specialisms in all areas, but we think GP registrars could cover the range of services that they ought to provide as fully fledged GPs. We are aware that GPs do see palliative care as important but in reality it is quite a small part of their workload. Even if we look at palliative care in its widest sense, it will not be more than a few patients each year that each general practitioner will have, who will fall into this category. I think further discussion with those who are responsible for training would be helpful. We have allocated £6 million between 2001 and 2004 as part of the cancer plan to improve the training of district nurses which I mentioned earlier on and that has been extremely well received and very enthusiastically taken up. I think one of the issues is to look more widely than doctors and to look at the whole range of skills and professionals, and to recognise that some of those professionals will possibly spend a much greater proportion of their time and therefore it will be much easier, both to enthuse them and to find the time in their training to put in a stronger mix of skills that are relevant to palliative care.

Q379 Dr Naysmith: I take the point you are making about palliative care and GPs perhaps not seeing many patients in a year. On the other hand, I also take the point you are making that lots of other professionals are involved as well. If you are going to move more people in the community to die at home, we need to have more people having these skills in the community and not just taking on half a dozen patients a year.

Miss Johnson: I am not sure, because I do not have the figures, what impact that would have on the number of patients because obviously a lot of these patients exist in the community for some time before they are maybe hospitalised in the run up or around the time of their deaths. I am not sure that it would affect the numbers hugely. I understand the point you are making but I think there is still an issue and we entirely accept there is an issue. I think it is worthy of further discussion.

Q380 Dr Naysmith: We are finding a lot more patients say they would prefer to die at home than die in a hospice or in a hospital.

Miss Johnson: Yes. The point I am just making is that those patients were in the community for a long time in any case so they effectively were on their GPs' lists. They are their patients and they would have been actively involved with their care up to a point. It just would not necessarily have been the closing stages of their life and their actual death. We need to recognise the fact that it still is something which will not impact on GPs. It is not so common as something like asthma. We have to accept that if you are trying to get GPs trained on things there are other things which people may well think they see an awful lot more people with, various conditions and issues, than they do with people who are in need of palliative care. I am not saying that does not make it important. I think it makes it extraordinarily important because of the nature of that time in someone's life and because of the importance of that care, but what we have to recognise is that there may be other professionals with whom the skilling up is going to be a lot easier and the dialogue needs to take place with the royal colleges about doctors.

Q381 Dr Naysmith: When we were in Scotland, we saw this young consultant in palliative care who saw it as part of her mission to go into acute hospitals with her palliative care teams and try to encourage them to feel less frightened of dealing with these kinds of situations. She very clearly told us that people were anxious to get help in doing it, once they saw a demonstration of how well it could be done and people were really very keen to get involved and much happier to do so. There really is a role for this kind of training and this kind of assistance if we could provide it, not necessarily through the colleges but if we can put a bit of pressure on and resources in to get people who know how to do it, to teach others in a sort of apprenticeship way, it would really make a big difference.

Miss Johnson: Sometimes these things are more informal than the collaborative arrangements we have but a lot of the collaboratives that we have are based on just those sorts of ideas. I certainly think that we need to use people within the services to skill each other up in areas where their work interfaces.

Q382 Dr Taylor: You have talked about the increases in consultants in palliative care that are planned. In the evidence, it has been pointed out to us that there are at least 100 posts in consultants in palliative medicine that cannot be filled at the moment. Is not the desperate fact that there are too few consultants around to do the training which brings one down to the absolutely crucial importance of the apprenticeship? I never had any formal training in this obviously because it was a bit of time ago, but working for consultants you very quickly worked out who was good at it and who was bad at it. With the junior doctor training as it is at the moment, getting harder and harder, there is less and less opportunity for skills to rub off onto the juniors who are working with the people who are good at this. Does this concern you? Can you see any way round this, because more and more generalists are going to have to do the bulk of palliative care but if they cannot be trained by specialists because there are not enough of them it has to rub off on them from people who are good at it. They are not getting the time for it to rub off.

Miss Johnson: We are working with the National Partnership Group about the scale of workforce needs, both nursing and doctors, on the palliative care side of things. One of the main issues is around nurses, to be honest, because that is one of the main areas where growth is going to be needed. We are discussing with them the scope of the workforce that is needed in the voluntary sector in the near future. We are working on the issues about what is needed. I think there are two things here: what is needed and then supplying it. We have some idea about what is needed. We have some workforce plans, as I have already mentioned, on consultants, but we also need to be clear about what the actual needs are and what the skills mix ought to be and what the routes are. People have different views about what the routes are that people ought to go through to get to the point of working in these, talking to people who are involved with this sector. Many people have come through different and diverse routes and I do not know that that is necessarily a bad thing because they bring a different range of backgrounds to it. The important thing is that, if they are interested in working in this area, they get the opportunity for training and that is why we have put the extra money into training and why we will obviously have to continue to look to make sure that we are training the workforce that we need for the future with the right skills. The £50 million that we have put out as part of the 119 million has also included money that will help on this workforce provision side of things, as indeed the money specifically related to training people is specifically related to increasing the range of skills available in the existing workforce.

Q383 Mr Bradley: For your purposes in the Department, what do you envisage will be the cost of providing the services recommended by the NICE guidelines?

Miss Johnson: I am not sure whether it is a single set of NICE guidelines, if you are talking about NICE guidelines on palliative care?

Q384 Mr Bradley: Yes, sure.

Miss Johnson: Where appropriate, NICE do costings of things and they will produce costings as part of their analysis.

Q385 Mr Bradley: From the Department's planning point of view, how much money do you think you will have to allocate to provide the services?

Miss Johnson: I do not have a figure for that. I am not sure that we have a figure for that at the present time.

Q386 Mr Bradley: I think you are just about to get one.

Miss Johnson: No, I am not about to get a figure because I know there is not one in what I have been supplied with. We are assuming that funding for implementing the NICE guidance documents is allocated as part of the total baseline to PCTs, so we are not expecting to produce some extra money out of that. We will be monitoring the implementation of it in the same way that we monitor the implementation of all other work that goes on in terms of performance management mechanisms and so forth. We do not have a costing figure that I am aware of as part of this.

Q387 Mr Bradley: Is it envisaged that all the voluntary sector current provision, say for hospices, will be funded through the public purse and be transferred to direct funding?

Miss Johnson: I do not think that is the intention, no. Currently, the level of funding put in by the government to the hospice sector is something like 35 per cent.

Q388 Mr Bradley: How would the national tariff work in terms of commissioning services from those hospices if it is not intended to fund that provision fully?

Dr Ladyman: From children's point of view, services that are commissioned for children will be paid for by PCTs.

Q389 Mr Bradley: If all the services from a hospice are commissioned by PCTs or, with children, a collective of PCTs, that ultimately could lead to fully funding from the public purse?

Dr Ladyman: That would depend upon the negotiated relationship between the PCT and the hospice. There may have been an agreement whereby the hospice continues to provide some of its funding on a voluntary basis and the price for the commissioned services will not therefore reflect the total package of costs, but that would be a local decision.

Miss Johnson: That is what I am saying also. In terms of the detail of it, as I said earlier in talking about payment by results, we are not in a position yet to decide exactly what the basis for funding for hospices is, but as I indicated earlier on we think it needs to reflect the difference that hospices are from other forms of provision. It may be more akin to some other specialist provision where again we are thinking about the way in which that ought to be reflected in terms of the tariff arrangements. Maybe there should be different arrangements for short stays and long stays, for example, and also in terms of whether we ought to have an episode based approach that would be supplemented for long stays is one option on it. There are a number of things under consideration and it would be a little time before we get the answer out of the machine, as it were. Everybody is engaged in the discussion on this and we are making sure that all the interested parties have an input.

Q390 Mr Bradley: In terms of the current situation and the extra 50 million that was put into palliative care and the establishment of the National Partnership Groups, what monitoring is going on currently to ensure that money is being spent by PCTs for palliative care? What arrangements are in place in the Department to look at the development of those palliative groups against the money that is currently allocated for those purposes?

Miss Johnson: We have been quite careful with the money that has gone out. In some cases, it has been bid for, for specific things. We have been very careful and demanding about the quality of those bids so the money is going in the right area. On the £50 million expenditure, we have had returns back as a result of inquiries that we have made from 25 out of the 32 networks and many of those are in quite a lot of detail. We are currently looking at the analysis of those returns and officials are going to report to the National Partnership Group and to me when the analysis is complete. I would be very pleased to let the Committee know the results of that analysis. We know there were problems in a couple of areas, but beyond that we are not aware of difficulties at this stage. I think those couple of areas you are aware of too and those problems have been addressed directly with those areas.

Q391 John Austin: I did not want to raise the specific issues of Greenwich and Swindon because Professor Richards has sent us a detailed letter and I know that there is a stakeholders' meeting to take place, but it follows on from Keith Bradley's question. Are you satisfied that in the future it will not be possible for PCTs to use money which is intended for additional money for palliative care to be diverted to respond to other cost pressures?

Miss Johnson: We need to make sure that, if we are sending out money centrally with a particular tag attached to it, it does reach its destination. With cancer funding, when we have done the audit and checked out a year or so ago that it was reaching cancer services, we found it was. The vast majority of it had gone in the right way. We will be concerned to make sure that any money that we send out nationally on a centralised basis with a particular tag for services attached to it does end up with those services, so we will be making every step to both check up that it has arrived, take steps if it has not but, most of all, to make sure in the first place that it is fairly tight and clear about what it is going to and that people will be monitored on how they are spending it, because I think that makes sure that we do not have the problem in the first place in as many cases as possible. It is impossible to give you a guarantee that it will never, ever go astray in any single case around the country, but we certainly do our best to make sure it does reach the services we want it to.

Q392 Mr Burstow: I have two questions arising from the answers given to Keith Bradley. One is on tariffs. You mentioned earlier that tariffs will apply from 2008.

Miss Johnson: By 2008.

Q393 Mr Burstow: Could you talk us through the role of the Commissioner PCT and what it will be once patient choice and tariffs are fully operational, given that in those circumstances the patient's wish as to where they wish to be treated and presumably receive their palliative care, whether it is at home, in a hospice or wherever else, is a matter for them in consultation with whoever makes the referral? How will commissioners, who no longer have control of the money because the money is with the patient, be able to exercise a commissioning function? How is that going to work? How will services be changed other than by the way in which patients make choices about where they want to go and have a service?

Miss Johnson: Obviously, the more minority something is the more the individual choices are likely to make an impact on it, so the smaller services are more likely to be strongly influenced by patient choice because they are also likely to be more specialised and there are likely to be more different choices made, as it were, perhaps than there will be about, say, where people have a standard operation of some kind or another, for the sake of argument. That is far more likely to be done in general at a local hospital unless of course the hospital is not able to provide a reasonably quick service, in which case it will be open to the patient to go somewhere else. That is one of the advantages of the system. The role of the PCTs is to look at the health needs of their area and to make sure that the local health services are configures in such a way as to be able to provide for the health needs of the local population. In an ideal situation, the PCT gets that entirely right, the providers get it entirely right and people go as close to home as they can or indeed are at home, if that is appropriate, depending on what the service is, and the money follows the patient. There is going to be some considerable skill needed from the PCTs to make sure that they do develop their assessments of local needs and providers are responsive to what people want, to make sure that that actually happens. The whole point of the system is not to fit the patient into the system but to make sure that the system fits the patient. Nobody as a patient - we are all patients from time to time - can do anything other than think that that is the right way round. We need a health care service that is patient centred.

Q394 Mr Burstow: This is probably an area for further exploration on a future occasion. Can I come back to costings and this issue that was raised just now? In the report by Derek Lonsdale published earlier this year he records the fact that the Department has costed national service frameworks and you made reference earlier on to wanting to ensure that there would be modules within the NSFs that deal with palliative care. Would it therefore be right to conclude that you have already undertaken costings for the implementation of those NSFs that already refer to palliative care and, if so, could you give us some indication as to what the costings were?

Miss Johnson: I do not have those costings, if you are about to ask me about them. I do not know whether Stephen wants to comment.

Dr Ladyman: I do not have any figures for you and I would not be in a position to give you any cost estimates for the National Service Framework for Children anyway until we publish them. Certainly, we do an assessment as to what we think the cost pressures will be of a national service framework before we publish it. You have to remember as well that most of the national service frameworks are ten year programmes. Some of them are five year programmes. The National Service Framework for Children will be a ten year programme and we will not be giving PCTs dated milestones by which time they have to do any particular step. It would not be possible, for example, to give you a figure that says the National Service Framework for Children palliative care will cost £X million next year. What we will be in a position to give when we publish it is an estimate of what we think the underlying cost pressures as a result of meeting it will be over the ten year time frame.

Q395 Mr Burstow: Historically, when the NSFs have been published, those assessments have not been published alongside them.

Dr Ladyman: They have not, so far as I am aware, no. You are right.

Q396 Mr Burstow: In future they will be?

Dr Ladyman: There are only two more NSFs in preparation at the moment.

Q397 Mr Burstow: I thought that was what you said. I was just trying to clarify it.

Miss Johnson: Clearly with some things like the cancer plan, which I know is not formally an NSF but has the same force as an NSF effectively, there was money attached to that plan, invested accordingly, and £570 million ----

Q398 Mr Burstow: This Committee and other Members in the House are always interested to know how much the money that was allocated matches up to the Department's own as of the costs of implementation. Therefore, having that assessment published would enable us to more clearly see whether there is a gap.

Dr Ladyman: That assessment would only make sense if we gave a time line. Were we to give a time line for implementing the national service frameworks, I suspect that you would be the first to stand up and say that we are trying to manage the National Health Service from the centre.

Q399 Mr Burstow: Because there are no longer any time lines, does that mean you are not making assessments of costs in the future?

Dr Ladyman: No. I am saying that we are making an assessment of the cost pressures that it will introduce. Clearly, something that is emerging in a national service framework is something that lots of people would like us to do but it is unaffordable within the time frame of the national service framework and it will not be published in the national service framework. We need to do an assessment of the cost pressures the NSFs produce in order to make sure that anything we are putting in it is affordable out in the field.

Q400 Mr Amess: The Committee does undertake domestic visits. In July, we will be going to the Welsh Assembly and we have John Mellor on the Committee. Baroness Finlay has informed our Committee that there is need for more palliative care consultants and specialist nurses in the community and the district general hospitals throughout Wales, so I wondered what plans the government has to increase the number of such consultants and nurses.

Miss Johnson: This is a matter for the National Assembly for Wales, I am afraid.

Q401 Mr Amess: I just wanted to confirm that that is the case and certainly when we visit there in July that will be a matter to be taken up.

Miss Johnson: Stephen and I are ministers for England.

John Austin: I know you do not understand the basic concept of devolution.

Chairman: Can I thank you both for a very interesting and helpful session? You have agreed to come back to us with one or two other issues. We have some detail to give you on certain things and hopefully we will clarify these fairly soon. Thank you very much for your help with this inquiry.