Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 340 - 359)

WEDNESDAY 26 MAY 2004

MISS MELANIE JOHNSON MP AND DR STEPHEN LADYMAN MP

  Q340  Mr Burstow: I can understand and appreciate 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% of people with the cancers—25% 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 advanced communication skills are needed. 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 models 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% 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. I am not going to comment on the specific example because I do not know whether that is accurate or not.


 
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