Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 300 - 319)

WEDNESDAY 26 MAY 2004

MISS MELANIE JOHNSON MP AND DR STEPHEN LADYMAN MP

  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 even 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 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 things separately. 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%. That will equate to a whole-time equivalent of 255. That is an increase of just over 50%. So there will be both a head count and a real increase of about 50% 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. These 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 doctors 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!


 
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