Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 1-19)

PROFESSOR CELIA DAVIES, DR ED MAYO AND DR JONATHAN TRITTER

1 FEBRUARY 2007

  Q1 Chairman: Good morning. I welcome you to the first session of our inquiry into patient and public involvement in the National Health Service. For the sake of the record, perhaps you would introduce yourselves and say what positions you hold.

  Dr Tritter: I am Jonathan Tritter, chief executive of the NHS Centre for Involvement.

  Professor Davies: I am Celia Davies and I am here in my capacity as an academic and social science researcher on public involvement. I carried out an independent evaluation of the Citizens Council of NICE and that is the specific subject on which I have submitted evidence. I have a previous piece of work that looks at lay members of regulatory bodies that may be relevant. I am visiting professor at the LSE having formally retired from the Open University. In some senses I have changed sides. In an executive capacity I am director of the Research for Patient Benefit programme which is the regional research-commissioning part of the NHS's reorganised research and development activities. I am beginning to experience `doing it' rather than researching and talking about PPI, but it is at a very early stage.

  Dr Mayo: I am Ed Mayo, chief executive of the National Consumer Council.

  Q2  Chairman: Thank you very much for attending this morning and also for the written evidence. It is such a large quantity that it will probably take us until the middle of next week to publish it. This is normally done very early on, but the amount of material has given us some logistical problems. Perhaps I may ask an opening question of all of you. All the evidence to this inquiry has indicated that the benefits of PPI include: resolving the democratic deficit, improving services, increasing accountability and ownership, and empowering communities. But the department's evidence mentions only improved services. What do you think it is trying to achieve through PPI, and will it do so through LINks?

  Dr Tritter: I think that LINks are a response to a recognition that PPI forums were not functioning as effectively as had been hoped. The opportunity that LINks offer is to bring together existing expertise within a broader community as they are local authority-based rather than NHS trust-based. It also provides a different opportunity because it links health and social care. In that sense it is about improving the transition and integration of those services potentially from the perspective of local communities. It also has the potential to bring to bear much more clearly the expertise of local voluntary and community organisations on issues around the prioritisation and delivery of services.

  Professor Davies: My answer comes from a little further out. One of the most important things for the Committee to consider is how the context of patient and public involvement has changed. It is almost compulsory for every department, not just the Department of Health. One of the most useful things that can be done, and often is not done, is to spell out actual and potential advantages. In my evidence I tried to suggest to you that there were perhaps three or four of them. The first is to broaden the range of options under consideration by bringing into the arena a wider set of people. Another is to try to generate really novel solutions to difficult health policy delivery questions. The third one is to enhance legitimacy. There is always the suspicion that it is being done as a cosmetic exercise and spin. I believe there is something very positive there, because it is about listening to concerns and likely objections and being able to rehearse those in the rationale for the steps that are being taken. The fourth matter is the need to facilitate social inclusion, solidarity and system growth. I believe that if it is done correctly it can do that. Speaking in an individual capacity, I am not sure whether the department is taking on board all of those matters. What it must do is try to improve services. Those are the ways that one does it, and they need to be spelt out and thought about.

  Dr Mayo: One of the privileges of my job at the National Consumer Council, which is in contact with people as consumers but also as public service users up and down the country, is to be able to listen to people's experiences and concerns. Recently, I recall sitting in on a meeting where people spoke about their experience of the NHS. Every member of the group who had been selected had had a life-threatening incident that had brought them into the hands of the NHS. The passion was palpable. But it went both ways in that those whose experience of the NHS had gone well were passionately supportive; where it had gone wrong they talked about having no dignity or being treated as second class. There is real concern and passion for the NHS. I believe that that was reflected in the participative process of the out-of-hospital care White Paper. In answering your question I am drawing on some of the comments that people made in those citizens forums, particularly in Birmingham. I noted that one person said, "We use and pay for these services and we should have a say." That struck a chord with a lot of people; but they also wanted it to be done well. Will people respond? Another question was whether or not it would make a difference. A third was that it was inclusive so it should not be the same old faces. If I tried to address that passion and those answers in responding to your initial question, I would say that with patient and public involvement there is a danger of having an overloaded agenda. I am not very good at growing tomato plants, but I have just about worked out that something is needed to hold them up; otherwise, they can fall one way or the other when the tomatoes reach a certain size. I hope that you will excuse the analogy. If we have four goals for involvement the danger is that we achieve none of them. In particular, accountability is one matter that we have not got to the bottom of, because, although we try to find out the answer by research, it is difficult to know what kind of accountability people want in relation to the NHS. Is it the accountability of a service provider, like Tesco or someone, that is just responsive to what people want? Is it accountability that is in some way mutual and engages them as partners in health, or is it some democratic process that has parliamentary or local councillor scrutiny? Those are very different notions of accountability, and I have never heard very clear answers either from the patients we talk to or others in this field. In view of that I believe that improving the quality of services is the most important single goal, because improved services will engage people where they need to be engaged and it will give people a say in it. If there is one measure of whether listening to patients and the public makes sense I think it is whether or not it improves services. In that case, therefore, I agree with what the department has said.

  Q3  Chairman: In evidence the department has relied on the findings of the Picker Institute which found that in some areas individual patients did not feel involved in their care: they did not feel involved in treatment decisions and were not given information about their condition and medication. In those circumstances, it is hard to see how LINks will help that situation, other than that you all seem to say that the general improvement of services should help. Do you believe that is a little non-specific?

  Dr Tritter: I believe that that is precisely because LINks are not designed with that aim; they are designed to help ensure that local people and community organisations have scope to input into the evaluation and development of services. That is a very different kind of involvement from individual involvement in treatment decision-making. I believe that we need to differentiate between different forms of patient and public involvement: individual treatment decision-making, service evaluation, service development, involvement in research and involvement in teaching or training. They are different categories of patient and public involvement, and it seems to me that primarily LINks are about involvement in relation to service evaluation and development.

  Q4  Chairman: The Picker Institute found that patients wanted involvement which was about their care and what happened to them in the health service. Is that a feasible option?

  Dr Tritter: I think that increasing pressure for and attention given to holistic or patient-centred care has been around for quite a long time. From my understanding, the perception of the Picker Institute is that increasing the opportunities for patients to have a greater say about their individual treatment decisions will in turn lead to greater opportunities for patients and the public to have a say about service evaluation and delivery. I believe that in her writing Professor Angela Coulter suggests that there is a causal relationship that starts on the basis of individual treatment and decision-making. I do not believe that that causality exists, although increasing opportunities in all these arenas is probably a good thing.

  Professor Davies: One of the most important things to consider is the different dimensions of patient and public involvement. All sorts of things hide under a general umbrella. For me, one of the fundamental distinctions is between involving people as citizens in hard choice decisions, maybe in commissioning, in the policy process of government and, at the other end, involving them as service users who have had the experience and can feed something back. Many people think that it is easier to do the latter. People can input their experience. We have had upwards of 15 years of initiatives at local general practice level in involving people; we have had organised service user groups making inputs into policies around specific diseases. I suspect that one feature of your enormous volume of evidence is that a lot of people are trying to create categories of different levels and different kinds of involvement. There is local and national involvement; there is involvement as patients and as citizens, and different things go on in each category. The emotional charge to which Dr Mayo referred does arise when people have had either a very painful or very good experience. I believe that in policy communities at the moment it is quite hard to deal with that level of emotion. People are rather afraid of it. In some of the arenas that I am looking at the most instructive contributions come from people who have had an experience like that. They have fed it back at the right level and are now asking whether they can intervene somewhere else, look at the broader policy and bring to bear their experience up a level of generality and look at how the services are designed in the first place. I think it is helpful to look at different levels and not try to push it all into one package.

  Dr Mayo: I agree with both of those contributions. The implication is that one needs involvement at every stage of service—design, delivery and evaluation—but there is also a point about the relationship between health professionals and individual patients and members of the public in a very intimate setting. Probably all of us have a sense of the qualities that make for a good doctor or nurse: listening skills and the ability to relate to patient circumstances and needs. Personal care is a key factor. I think that much of the responsibility for that needs to start with health professionals who are part and parcel of delivering a modern service that is critical to people's lives. We have to see patient and public involvement not as the way of delivering it, because responsibility needs to rest primarily on providers, but a way of giving them information and feedback to enable them to do that at certain points of the cycle.

  Q5  Mr Amess: Dr Mayo, I very much agree with your earlier remarks about tomato plants and Tesco. We are only too well aware from what we are being told that trusts are supposed to be much more accountable to local people, but there appear to be enormous pressures to meet national targets. How do the witnesses believe that these apparent conflicts will somehow come together and work their way through?

  Dr Mayo: I am never clear where with the NHS rights stop and responsibilities start as citizens. We have an idea of the NHS which I believe is a fantastic founding myth, namely that it is free at the point of need. It is not always so. If we get knocked over in the street it will pick us up. That is a fundamental benefit to our wellbeing. But what the NHS will or will not cover varies from area to area. We find it difficult to deal with that. We do not know whether it is a national or local service. One of the reasons it is difficult to deal with is because these discussions are not really held in the open. Commissioning decisions and the nonsense, if I may say so, of the current prescription charging system, which neither delivers on financial gain nor on any intelligent health approach, are symptomatic of the fact that decisions are being taken behind closed doors. Whether those are national or local closed doors I do not know, but I believe that as part of the move forward in an age where there will be increasing demands on the NHS for new drugs—we will not always have the kind of fiscal settlement that we have had over recent years—it is all the more important to open up these decisions. I have probably answered only a quarter of your question, but whether it is local or national it is about opening up these decisions so there is clarity about who has responsibility for what.

  Professor Davies: I think that it opens up so much that it is hard to know where to start. The biggest issue related to your question is about how our sense of democracy is now changing. Over the past decade we have made amazing transitions. Stakeholders were part of the policy process in setting the NHS plan, for example. Many of the organised consumer and patient groups were involved in that process. We have engaged with varying results over the past few years in exercises, for example a citizens' jury on this and a people's panel on that. Somehow we are expanding notions of participation and democracy and there is an open question about the joins between that and old-fashioned electoral democracy, if I may call it that. Some people take the line that when one has these participatory initiatives the results should be compelling and binding. I do not take that view. I believe that they should be part of a debate, and there are people who are elected and accountable—those sitting in this room—who have to take a final decision. One of the interesting matters from the citizens' council that we studied in such depth was exactly that view. We found that people were really keen to understand what the issues were and the hard choices that the NHS faced. They wanted to be assured that they had been heard; they wanted to see their arguments in the final document. They did not want to take the final decision; they wanted it to be taken elsewhere. I believe that there is an important issue about expanding our idea of accountability and giving good accounts of how decisions have been reached and the different components that come into it. Patient and public involvement is one component. We need to draw a picture of how these things fit together. I do not think we have that picture at the moment.

  Dr Tritter: I agree with many of the things that have been said by the previous speakers. It is worth suggesting that often national targets do not define processes but outcomes, and we want to ensure that the processes to achieve those targets are shaped in relation to the priorities and experiences of patients and the public. That is a key driver. For example, commissioning decisions made at local level have to take into account national targets, local priorities, existing epidemiological evidence and also different communities of interest. It is the balancing of those different tensions which makes those decisions so difficult. Greater transparency will help to justify and provide an account of how those decisions are reached.

  Q6  Mr Amess: Another point related to this is A&E units. When I was Member of Parliament for Basildon the health manager suddenly and without any warning recommended that the A&E unit be closed. I will not bore the Committee with the story of what then happened, but people power happened big time. It is very interesting to see what is going on now. To cut a very long story short, with one day to go I stopped the closure of that A&E unit. There were mass demonstrations. It was an extraordinary story. I heard Professor Davies' earlier remark about the role of elected representatives. I genuinely do not believe that nowadays it is quite so easy for Members of Parliament to achieve that outcome, but a lot of this is happening at the moment. We are told that these closures will not just save money but make the service better. Given that nothing will change in terms of people protesting about it—at Prime Minister's Questions yesterday there were three questions which centred on these issues—how do you see this working now? Do you believe that the people should be listened to?

  Professor Davies: I believe that the issue is a broader one and concerns the reconfiguration of services and all the present press coverage. That leads me to think about what the vision of a better process may be in future. I come back to my Citizens Council experience. The deal behind that experiment was the question of whether one could create an informed public around a particular topic with the privilege in a sense of hearing all points of view from a diverse set of people who were then able to debate it and understand the various positions. That is a lovely deliberative ideal, but it is hard to reach and costs a lot of resources to try to keep it going. If it can work one will not have the press and media winding up an issue but the viewpoints of all the stakeholders, professional providers, management and the local community, can be balanced in debate. If one can create forums like that one will have a much better quality of debate about what should happen rather than a knee-jerk defence of an existing facility. That is where we have reached under the arrangements for consultation. Can we broaden and develop them? It seems to me that one of the matters we need to develop is the notion of public management. It has always defeated me that there is not a stronger notion that a key part of the business of a manager in the public sector is to understand his or her public. The first knee-jerk reaction should be to go out and do that and bring into the room different viewpoints. I do not believe we do that at the moment and we could do a lot better, but it is a long way from where we are. Maybe I am the sole person at this table who can say that very often on paper there is a lot of apparent support for public involvement but behind it there are a good many worried and threatened people who say, "How can we possibly do this? We have these targets and timetables. We are not convinced." People are not really informed about this. We have to break through that and bring it out into the open and ask how an informed public can be created so that those viewpoints are brought into the room. There are examples of how it can be done.

  Dr Mayo: I would give a somewhat blunt answer. First, we accept that there are areas of very good practice locally, but broadly there is has been an inadequate, ineffective job done in terms of involving the public over the previous period. If that had been done better and right it would have been easier to get the public on side with some of the reconfigurations that we see going on. I am quite critical of what we have seen. Second, in many areas, such as accident and emergency, I hear two discussions, although I am certainly no expert on acute services. One is the professional view that it is a nuisance to crack down on accident and emergency because there are all kinds of difficulties. But the public quite like it. I do not have any research evidence from our own contact with patients to back this, but accident and emergency is warm; there are toys for the children and you know that you will be seen. There is a mismatch between the professional and public view. I think that there has been a mismatch in the past around issues like cleanliness and the continuation of hospitals themselves. By and large, I would say that the public has got it right. The public has often been ahead of professionals on these issues. I am sure that that is a somewhat "tabloid" remark to make, but there is value in listening to the public early and doing it right and sharing the trade-offs with them because I think you get sense out of them.

  Dr Tritter: The issue of reconfiguration and the requirement to consult is one that sits in the Health and Social Care Act 2001. How it has been implemented has varied hugely, and certainly in some places there has been a sense that there was consultation after decisions had been taken. I do not believe that that is necessarily how it has to be. If consultation is done properly it should be about identifying those key sensitivities from the local community around different kinds of plans or scenarios for changing provision. One of the ways to make it better is to develop an integrated approach to systemic patient and public involvement within NHS organisations. This means that if on an ongoing basis NHS organisations engage with people on strategic decision-making, reconfiguration does not come as a huge surprise but is part of what has been on the table in the discussions from the beginning. I believe that it is the surprise which creates much of the difficulty. That takes me in a sense to some of the points made by Professor Davies. Involving patients and the public is hugely scary and threatening for many members of the NHS, in part because the constraint or space within which those decisions are made is rarely made explicit. I refer to the constraints on decision-making, the definition of the roles of participants and the opportunities for outcomes and changes. If those are made explicit from the beginning one creates a safe place for those kinds of deliberations and the outcome becomes much more acceptable to all of the parties.

  Q7  Charlotte Atkins: The Government Bill very much focuses on PPI in local decision-making, but is there enough of such involvement in regional and Department of Health decisions?

  Professor Davies: I think that there are a lot of fragmented efforts. There are initiatives about which people become enormously enthusiastic. What we do not have is a strategy. At one stage, maybe back in 1999-2000, local government was doing a great deal in terms of consulting the public with all sorts of different initiatives. Professor John Stewart came to a meeting of the Public Accounts Committee and was asked about it. He said that that was all very fine but he did not understand what was happening at central government level: there did not seem to be a strategy. I think that there still is not a clear strategy or map. We talked earlier about involvement at all levels. To build a picture of it that the public understands so it can make choices about where it may become involved is quite important. We do not have it at the moment. There is perhaps over-enthusiasm and under-thinking, as it were, about where to go and develop it.

  Q8  Charlotte Atkins: For instance, if we take the example of the reconfiguration of Primary Care Trusts, on which this Committee did some work, it is clear that in some areas there were huge campaigns and public involvement in wanting to keep PCTs relatively local. In my area of Staffordshire the Strategic Health Authority completely ignored the local response. It went through a charade where it appeared to consider the overwhelming public response about keeping the local PCT and then ruled against it and went for its original thoughts. That involved the present chief executive of the NHS. Subsequently, ministers overturned that decision. It seems to be a bizarre situation where if one has consultation and loads of people respond at regional level the Strategic Health Authority completely ignores it and says that it does not really matter and it knows best.

  Professor Davies: That gives consultation a really bad name, and people then start to say it is all cosmetic anyway and it does not work. There is a potential negative spiral on both sides here in situations like that. Those within the service who feel that they absolutely must run the consultation are very doubtful about what they can do with it. As Dr Tritter said, they cannot see the space where they can act and so they close it down fast. It seems to me that we have to make a real step change from old-fashioned cosmetic kinds of consultation to something much more robust and engaging where people can take ownership of it. To do that the things that you are talking about are in a sense too late. Where is the pattern of involvement as a result of bringing in a set of people in a community who understand the array of available health services and can see the choices so that it does not become a question of whether or not to close the A&E department but it is now known that what people want is access at particular points? One is NHS Direct; one is walk-in centres; and one is A&E. Here is the map for the local area showing where all these services are. One then has a discussion about what should be where and how the resources can be used. It is a much more proactive way to deal with it and sometimes it involves a sea change on the part of the NHS. It is also about local authorities and the health service which are very different cultures. One has elected representatives and is working through all the time how matters will play in the constituencies. The NHS is a very different animal; it is organised top down with strong professional input. NHS people have to make a bigger change when thinking of real accountability and involvement than local authorities, and we also see some of that in the present debate.

  Dr Tritter: There are significant examples of consultation by central government. One can think about the Department of Health consultation document Stronger Local Voices which generated a huge number of responses. It seems to me that how they were acted upon is a good example of how consultation can occur. I believe that the reconfigured Strategic Health Authorities have a significant challenge. Perhaps many of them have not fully recognised that they have legal responsibilities under the legislation for involvement and engagement. That has not yet been fully worked out. One of the things that the NHS Centre has to do is help Strategic Health Authorities to think about their responsibilities and support and develop their capacity to do that kind of work.

  Dr Mayo: In relation to the first question about the national level, I think there are two sides to it in terms of patient or focus. The first is patient insight. Does one understand people in all their diversity? Does one use basic tools like segmentation and the like in order to be able to build their experiences into service design? The second is involvement. We are now beginning to see action on the first at national level. For example, it has been very clear with public health challenges like obesity that the NHS has a stack of data on service use and epidemiology and disease databases, but it does not know what is going on inside people's heads. It does not know what it feels like to have an overweight or obese child. I think that to move into that field has been a really positive area where we have seen some emerging good practice through the social marketing of public health. Therefore, insight at national level is beginning to be acted upon. As to involvement, as a generalist consumer body sometimes one hears that there is a play-off of different interest groups. One will have patient groups on particular diseases and some concerns about professionals and whether or not their voices, not somebody else's voices, are being heard. By and large, I think that the voluntary sector has real life and energy when it comes to engaging in national policy-making and yet the door is sometimes closed because of its ability to do that. A fantastic organisation like the Long-Term Medical Conditions Alliance operates out of a large shoebox. The organisation will not be happy that I put that on record. The present proposal to create a coalition of voluntary organisation to give a national voice in order to engage in national policy-making could help. Sometimes one needs engagement and out-and-out campaigning, and the independence, life and ability of the voluntary sector to say, for example, that cancer patients are not being treated with dignity, whether it is the provision of wigs or something like that, and this is a key part of giving life and energy to the formula for involvement.

  Q9  Charlotte Atkins: But are there decisions which should be taken nationally and other issues that should be decided locally, and what happens when there is a clash between the two? Clearly, there are issues which in the end must be decided nationally. How does one arrive at a reasonable compromise?

  Dr Tritter: I believe it is called politics. We are talking about a cash-limited system and decisions about forms of rationing in response to different inequalities of need and access. It is the responsibility of ministers to make decisions about relative allocations on the basis of the evidence before them. I emphasise that responsiveness at local level about process can make a huge difference to the experience of meeting those targets that may need to be set nationally. We should not focus solely on the tensions between national and local targets and miss the chance to say that local responsiveness around process can be valued.

  Q10  Charlotte Atkins: Basically, however much we consult the buck stops with the secretary of state?

  Dr Tritter: I believe that Parliament has a fair role to play as well. Certainly, the method by which Parliament engages with the department is a way of identifying those tensions around particular decisions that are made about which people have different opinions.

  Professor Davies: I think that we are in a moment of transition. Your question is really about the whole organisation of the NHS and the move from a command and control system to something that is somehow more responsive. I do not see that as yet any of the political parties has a coherent and developed way forward on this matter, and some of the pressure that comes from patient and public involvement locally will perhaps push towards this new settlement between what is decided locally and centrally. I believe that at the moment it is up in the air.

  Dr Mayo: Within the wider Bill and subtle changes going on at local government level one sees opportunities for connecting health and social care and reconnecting public health with some of these other areas which I believe are genuinely exciting. We have a whole set of local area agreements and frameworks to be able to deal with that, but in principle I believe that at local level it looks very encouraging. What we do pick up sometimes in our contacts and research is a degree of public scepticism about overturning some of these things too often, so if there is a dynamic flux between national and local—I do not know whether it is fair to characterise the late 1990s as a centralising period and the period since as an attempt to localise—it is quite difficult for the public to gauge these constant reconfigurations. The costs of those changes are also difficult to gauge. To some extent I believe there is an interest in reaching a stable settlement around the national and local debate rather than a change of view from time to time.

  Q11  Dr Stoate: Dr Tritter, there is a real paradox in relation to patient choice. If one looks at things like Choose and Book and Payments by Results, clearly they are designed around the concept of patient choice but patient choice has several aspects. First, it applies only to some people and in some situations, because effectively in some parts of the country there is no choice, particularly for groups of patients who are less mobile. Some groups of patients will exercise less choice than others. Conversely, the theoretical answer is that if a lot of people exercise choice it is quite possible that some units may run down and even close altogether because people choose other units. The paradox is that those people who have less choice are the ones who sometimes suffer because those with the greatest choice have moved away and effectively made a unit unviable. What can LINks do to try to reduce the possibility that choice may paradoxically impact very badly on certain groups of patients?

  Dr Tritter: I am not sure. As I understand it, LINks are intended to input into commissioning decisions and to bring local patients' and people's experience of services to bear on what services should be commissioned. That has an impact at a collective level on what should be provided for the community as a whole, which is different from what individuals may choose to do for themselves. LINks may in a sense serve as a counterbalance to some of the individual choices being made. LINks also have a remit to try to be as representative of diversity as possible and bring together those who have least voice and who may have least access to services or greatest health inequalities so their views can be brought to bear on decisions about commissioning. It may also serve as a counterbalance to the choices made by the most activated individuals.

  Q12  Dr Stoate: Will they have any power to change things? If a good number of middle-class patients, for example, vote with their feet and we are left in a situation where those least advantaged effectively must have what is left, are LINks able to make a meaningful difference in terms of changing decisions, or will it be a talking shop?

  Dr Tritter: The legislation sits in Parliament, so it depends on what LINks end up being.

  Q13  Dr Stoate: What would you like LINks to be?

  Dr Tritter: That is a much harder question.

  Q14  Dr Stoate: That is what you are here for.

  Dr Tritter: In view of some of the things that have been said, LINks have the potential to bring together that expertise, which is distinct from individuals' decisions. Because they are framed around different kinds of collectives within the community they bring to bear a collective view which is different from the aggregation of individual views. I believe that that is a huge opportunity. Apart from democratic mechanisms, we have not had other mechanisms to gauge collective views or understandings, particularly when such views are specific interests. The needs of particular ethnic minority groups or categories of people with special needs can be reflected in LINks in ways that may not be clear or obvious in democratic mechanisms or in individual patient choices.

  Q15  Mr Campbell: Is there such a thing as over-consultation? We see volunteers and public time being used when sometimes they should be reserved for special decisions rather than for going the whole hog. Should only special decisions be made because there is over-consultation? Is it a possibility, or is it happening?

  Dr Mayo: It is a possibility. From the feedback we get about the service user perception of public services there is a good deal of sympathy for the idea that doctors, nurses and also policemen and teachers are somehow paper-worked to death, whether it be the setting of national targets or something like that. That is the generic sense of sympathy for the burdens upon people, and I am sure that inappropriate consultation is part of that. There are also many examples of consultation that is not really meant; it becomes a tick-box and add-on. If one asks about the costs and burden of listening to people one also thinks about the costs of not listening to them and not designing services around people's needs. The professional commissioning and delivery of health services must also be core; one does it on an informed basis of people's needs. You are absolutely right that the quality of it can vary extraordinarily. If you took Dr Tritter out for a drink afterwards he could give you lots of examples of well-meant involvement but not an effective way to do it. In some senses that is why the outfit that Dr Tritter represents has been established. It is an attempt to say that there are lots of different ways to do involvement. Diversity is good, but the most important aspect is that one will do different things that one has learned from it. One learns what is good and what is not. What I hope to see over time is a greater sense of what is and what is not appropriate consultation.

  Q16  Mr Campbell: The majority of PPIs are seen to be good, but doing them badly would certainly cost money and make people very angry if they got their decisions wrong. Would it cost money in the end to do them badly?

  Dr Mayo: I think that it does cost money. There are some excellent examples of involvement in social care, but it is quite variable. The NHS should and could do a lot in the social care field involving people with disabilities. If you look at the past three to four years in my view a very significant amount of money has been put to very little use. There are some excellent examples of PPI forums around the country. Some are very small and are the first to talk about some of the problems they face. If one adds up the numbers, something like £28 million is spent on this per year. There are about 5,000 members of PPI forums, so that is approximately £5,000 plus for each member to keep going every year. That is a lot of money. Could we use that money more effectively? I think that that is the promise of LINks. Involvement does take resources and we need them. The existing health forums could probably have done a greater job if they had had more sources, and they would be the first to say that.

  Q17  Mr Campbell: Is the bottom line that they do more harm than good?

  Dr Mayo: They are your words, not mine, but I believe that the money spent in previous years has been poor value for money for the involvement. If a redirection of that money through a more diverse approach to involvement can bring in many more people that will be money well spent. It is like taking out insurance to make sure that the service one has is what is actually needed. The costs of getting that wrong are far greater. It is worth investing this money.

  Q18  Mr Campbell: A lot of people become angry when decisions have already been made. They are stuck because the decision has already been made and they have not been consulted. If that happens regularly the PPI dies a death.

  Professor Davies: You referred to over-consultation. It seems to me that the biggest danger is disillusionment and scepticism and people write off the whole exercise. It does not mean anything and therefore people return to a situation in which they have no belief in the process. NICE's national advertisement for its Citizens Council asked whether people wanted to improve the NHS. NICE received initially 35,000 expressions of interest which to me is absolutely stunning. Four thousand people followed it through by filling out application forms and so on. It also did other things to get to hard-to-reach groups. In our research project we talked to 30 people out of that number who then became the Citizens Council. I was very taken by the answers they gave. People felt that they wanted to give something back; they had a sense of public duty. One person said, "I know that the NHS has enormous challenges in the future. Is there some way we can help it face those challenges?" Others said that they wanted to test themselves, grow and stretch; they wanted to be involved in something.

  Q19  Mr Campbell: Is it not the case that there are some decisions that can be made and others that cannot be made? Do all the decisions have to be put in the melting pot?

  Professor Davies: The crucial thing is that whoever hosts this exercise in consultation must be honest and straight with people about those things that can be changed and those that cannot be changed and about timetables and difficulties.


 
previous page contents next page

House of Commons home page Parliament home page House of Lords home page search page enquiries index

© Parliamentary copyright 2007
Prepared 20 April 2007