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Committee of Public Accounts - Minutes of EvidenceHC 1759
Taken before the Committee of Public Accounts
on Wednesday 18 January 2012
Margaret Hodge (Chair)
Mr Richard Bacon
Amyas Morse, Comptroller and Auditor General, NAO, and David Moon, Director, NAO, gave evidence. Ashley McDougall, Director of Parliamentary Relations, NAO, and Marius Gallagher, Alternate Treasury Officer of Accounts, were in attendance.
REPORT BY THE COMPTROLLER AND AUDITOR GENERAL
Services for people with neurological conditions (HC 1586)
Examination of Witnesses
Witnesses: Steve Ford, Chair, Neurological Alliance, and Dr Steve Pollock, Lead Clinician in Neurosciences, gave evidence.
Q1 Chair: Welcome to the two of you. Can I just explain the purpose of this session? It is an innovation that we have introduced in the Committee to try to spend a bit of time, before the main session in which we question the accounting officers for this area of work, discovering the key issues we ought to focus on. We are not trying to catch you out on anything; we are hoping that you can help us and inform the later questioning.
To start, I will throw a general question at you. A lot of extra money has been invested in this area, but from reports you have put forward and from other bits of evidence we have-it is not very strong evidence- it looks as though we have not had value for money. What went wrong, and what would you do from here onwards?
Steve Ford: Thank you, Chair, that is a really good starting point, because there has been an increase in neurological spend. Our issue, and the feedback from people living with a neurological condition, is that that has not been targeted resource. As we have seen from the Report, a significant chunk of the additional expenditure has gone on an increase in emergency admissions, which is actually when the system has failed, effectively, and let someone down.
Our concern is that what was a great plan-the National Service Framework launched in 2005-which had wide support and really provided a platform for us to put in place integrated services that really would meet the challenging needs of people living with long-term conditions, had no impetus behind it at all. As a consequence, it was left to local areas to do what they could, and we have a real patchwork of services: some are really good, but they are quite rare, and there is a variable quality of service.
The first point is that we do not know where the money has gone-there is no means of measuring this and measuring the outcomes-but we do not believe it has been spent in the most effective way to meet the really challenging needs of people living with long-term neurological conditions.
Q2 Chair: What would you do from here onwards, given the new landscape we have in health, under the Health and Social Care Bill?
Steve Ford: The new landscape gives a really good opportunity. What we are looking for is an outcomes strategy for neurology which means that we can have a really clear vision about what we want to achieve, and then make sure that there are the mechanisms and support to encourage local clinical commissioning groups, working together through networks, to have a look at services, to use the resources in the most effective way and to involve service users in that. We are looking for leadership at a national level, and we would like to see a national clinical director who can really provide the focus, the impetus and the challenge that are needed to knock some heads together and make this work.
Q3 Chair: Looking at the new outcomes framework proposed by the NHS-we had a submission from Roche, although I do not know whether other Members have it with them-I cannot quite see how you get anything specific about neurology in there.
Steve Ford: No, that is the point. The NHS is talking about an outcomes framework for long-term conditions.
Q4 Chair: What do you want in there?
Steve Ford: We want a neurology outcomes strategy.
Q5 Chair: Which means what? Be really specific.
Steve Ford: Okay. What we would like to see is a clear statement from the NHS at senior level that sets out the vision for neurology services across primary, secondary, social care and public health; that provides leadership; that sets out arrangements to support the NHS-the emerging commissioners-to understand and promote best practice; and that promotes neurological networks to support the commissioning of neurology services at local level. What we are looking for is an outcomes strategy for neurology.
It is really important to look at the significant improvements that the NHS has made in stroke and cancer. What we are saying is that neurology deserves the same kind of focus and attention. Resources are being deployed into neurology; we have seen the increase in resources. We want to make sure there is value for money and that the money is really used effectively.
Dr Pollock: Can I tell you how it looks to me as a clinical neurologist? Neurology is slightly complicated, because it is a heterogeneous set of conditions, which have different outcomes. It is not like diabetes, where there is a single measure to tell you whether or not you are going to run into problems. Measuring neurology is always going to be a little bit difficult.
When the NSF came out, people recognised this and resiled from it-they did not want to get involved in something that was complicated, so they picked the one thing that they could easily understand, which was the 18-week pathway for out-patients. The net result was that a huge amount of money was poured into reducing out-patient waiting lists. This was very good-the out-patient waiting lists we had before were unacceptable-but it had two consequences.
First, it was completely unregulated; there were no checks or balances. What happened was that the thing just went on a "predict and provide", so a lot of the money that was spent on out-patient work was not being spent particularly well. There is a comment from the King’s Fund that "not all referrals are clinically necessary" and a "substantial element is discretionary and avoidable". There is recent evidence to show that anything up to a third of the patients who are referred to neurology do not really have neurological problems. That is one side where I do not think the money was being terribly well spent. Although it did achieve some good outcomes, it had a disastrous effect, in my opinion, on the two other facets of neurology. Neurology consists not only of out-patients, but of in-patients. We have seen from the Report and we know from studies that are done everywhere, up and down the country, that neurology is very commonly admitted into acute admissions, and it is very badly handled. Most patients never get to see a neurologist.
The other thing that is missing because all the time is spent on seeing these new patients, is that that you do not get the clinical leadership that is necessary to set up the networks of care and the programmes of care that are absolutely essential for the development of the management of long-term conditions. What has been lacking in sorting out epilepsy, multiple sclerosis and Parkinson’s disease is a central clinical leader working within a PCT or an acute trust, who is there to say, "I’m responsible for setting up this service. What are the resources that you can give me? I will work within those resources. I will work for more resources, and I will try to tie in these things in an integrated manner, so that we take in the third sector, private medicine where it is necessary and social services." Instead, what happens is that these people are busy seeing more and more out-patients. The number is just climbing and climbing-it goes up 10% per annum-in a completely unregulated way.
The problem, exactly as Steve said, is that we do not have any central steer or any kind of driver to try to sort this out. The problem we will have to deal with is how to fit this into the new world. It is quite right that much of neurology should be devolved into the commissioning groups, but in order to do that, we need to know what we are commissioning. Right now, that is not happening.
Q6 Austin Mitchell: I am a bit simplistic in my views, but what I got from what we looked at in cancer treatment was that it was a success because there was national clinical direction, and targets and timetables were fixed and defined. How far is it the case that you could not do that with neurology, into which we poured money? Apparently, it did not go in the right direction-not like the cancer money. Is it not possible to fix targets like that? Is it too fuzzy to define? Is the problem really that people are best not treated in a hospital, because that is expensive, but supported in the community? Are these the two things that precluded success in this strategy?
Dr Pollock: Absolutely. The stroke strategy was immensely helpful in getting stroke away from the position it was 20 years ago, which is where neurology is now. It is because it had a clear direction, it had a clinical director and it had teeth. The NSF for long-term conditions has lots of good ideas, but it was woolly. It did not tell us what to focus on, and because neurology is more complicated than stroke, it was very difficult to get a proper steer on it. There was nobody over the last five or six years in the Department of Health who was giving that steer for when you came up with good ideas, such as devolving services to the community.
The Government themselves ran a very successful programme called Action on Neurology, and there was the Modernisation Agency. They were full of ideas as to how you could make neurology work better in the community. There were four programmes here that used GPSI-general practitioners with special interests-in epilepsy and in headache; telemedicine for the use of remote epilepsy clinics; community brain injury services; and triaging e-mail referrals, which reduced the number of referrals. They were all there. They were good ideas that were being enacted, but what happened? The programmes stopped, and there was nobody to talk to and nobody to develop this and say, "Let’s take it out. Let’s roll it out."
You can see that even now we are getting that in this report from the Royal College of Physicians and the Association of British Neurologists. Again, it is packed full of ideas of how you can spend the money better. Of course we feel that we need more neurologists in the long term; compared with the rest of western Europe, there are not enough neurologists-but that is not actually the issue. What you need to be doing is spending the money more effectively. The problem at the moment is that we do not know who to talk to and say, "Look. There is a really good headache service run by a GP in South London. Why can’t we emulate that?"
Steve Ford: If I can elaborate, the reality of that is that, because it is not a national priority in that sense, it is really difficult to engage local people about those kinds of issue, because people say, "I am not being measured against that. That’s not one of my priorities." It is really difficult to implement what is actually a very easy and obvious thing to do.
Q7 Chair: You are old-style NHS. I would say to you that, in the new world, you have to find mechanisms within the new landscape and framework that give you those outcomes.
Steve Ford: An outcomes strategy fits completely within the new landscape.
Q8 Chair: You have not been very clear to me. I will go to Fiona, because we run this session for about half an hour and then we go into the main session, but just give me some indication of the sort of outcomes that we would measure. I do not quite know what it means. Come back on that later. Let the others have a go first.
Steve Ford: Okay.
Q9 Fiona Mactaggart: I agree with your analysis, but I think you are missing out a bit of the picture. I should declare an interest in that I have MS. That is not on my declaration of interests, but it is obviously very relevant to this session.
One thing that is different about neurology is that with most neurological conditions the patient is likely to know much more about their condition than their GP. GPs now have no neurology in their basic training. As I understand the Royal College of Physicians’ report, the majority of people who are admitted to a district general hospital with a neurological condition do not see a neurology specialist. As well as the national direction, framework and leadership that you talk about, that has to be significant, does it not?
Dr Pollock: Yes, absolutely. That is one of the reasons why neurology admissions are rising. People are being identified as having neurological conditions, but they are not being dealt with very expeditiously, so they have inordinately long stays and a higher than acceptable rate of readmissions.
I will explain how we have tried to tackle this in East Kent. This document is the Kent and Medway neurosciences partnership strategy, which the old SHA set up in 2007. What we did was get all the key players from across Kent who were involved in multiple sclerosis. We were able to get a lot of evidence to show that MS was not being worked terribly well where there were unstructured services. We demonstrated that if you had MS nurses, as there were in East Kent and in Dartford but not to such a great extent in West Kent, you could reduce admissions and bed days, and you could free up out-patient time. It was a win-win situation.
In order to achieve that, you needed to have a clinical leader to drive the programme along, and you needed support from the PCT and from the local providers, which we were able to get. As a result we were able to define a service which was built not round a neurologist but around the MS nurse. It was clear-we had good evidence to show this-that where you put MS nurses in, admissions dropped and the number of patients referred to clinic dropped. The MS nurses were doing it much better than we were, so we said, "Right. That’s it. We’ll build our service around the MS nurse."
Now, whenever a patient in East Kent is diagnosed as MS they are sent into a system where they meet the MS nurse who becomes their navigator. That is their lifelong friend. Now it is slightly different from being a key worker, because a key worker can change, depending on what the problem is. A key worker if you have incontinence would be the continence nurse; if you got a problem with social services, it would be the person with the particular experience there. The navigator-the MS nurse-is able to say, "I can sort your problem, or I know somebody who can." It has been dramatically successful-it got a national award and we are extremely proud of it-but again I come back to the problem we face, which is: how do you promulgate this? How do you get these ideas out into the wider world? It ran into exactly the same problem as Action on Neurology.
Q10 Fiona Mactaggart: Yet the Department of Health says it does not think we have provided enough evidence to say that this is not good value for money.
Dr Pollock: I’m sorry, but I don’t agree. Even if you were to take a very simple outcome measure, deaths from epilepsy, that has been rising over the last decade as money has been poured into neurology.
Steve Ford: It is quite an indictment of the service that we do not know what value for money is and that the information is not there to tell us.
Chair: We will come back to it at the end, but you might think about what outcomes you think we should have.
Q11 Nick Smith: Dr Pollock, I am still trying to bend my head around some of your remarks. As I get it, a third of patients referred should not be seeing a neurologist anyway and the majority of patients who have a neurological condition are not seeing a neurologist. There is a complete mismatch between patients and the clinicians who are supposed to be dealing with them. Is that right?
Dr Pollock: Well, broadly. I would qualify what you said slightly in that one of the neurologist’s jobs is to decide whether or not there is a neurological problem. In an ideal world if you feel that you have multiple sclerosis or Parkinson’s disease, whether or not you have-if you have just been looking it up on the internet and you think, "Ooh, I’ve got this tremor. I’d like to see a specialist."-in an ideal world that would be a reasonable action, but the fact of the matter is we have not got the resources to do that except by depriving in-patient neurology and long-term neurology.
There are ways round this. For instance, 20% of out-patient referrals are to do with headache. I think headache could be managed in the community by trained GPs. There is no reason why not; there are good examples; there is published evidence. What they have to have is to be networked into the whole service, so that if they get out of their depth with the one in a hundred patient who has a headache from a brain tumour or something like that, they can quickly refer to the neurologist. It is a matter of organisation, and right now that is what we are not getting. To exaggerate a little, it is easier to see a neurologist because of a tingling finger than it is to get neurological treatment if you are in a life-threatening illness like status epilepticus.
Q12 Nick Smith: Thanks for that. Mr Ford, you talked of the increase in funding from £2.1 billion to £2.9 billion. In the first part of your remarks you talked about it being spent on emergency admissions, or at least some of it being spent on that, but then you said that you did not know where it had gone. Have you got some sort of assessment of where the bulk of this large amount of money went?
Steve Ford: The point is that it has not been measured. That is really the issue. There is no monitoring system at all around neurology services, so we can talk about the amount of money that is spent, but it is very difficult to measure the impact around that. There is no target and because of that there is no accountability in the system either for any of that. We do not know. There is a gap in data here.
Q13 Meg Hillier: Maybe you can think about it and at the end talk about what targets you would like to see and you think would make a difference. It seems to me the Report shows that there is a poor link-up between health and social care. We have seen this in other areas as well. The stark figures about the increases in emergency admissions suggest that there is a serious problem about social services/community care, as you highlighted. Is this because local authorities provide that, and they are not joined into the national system?
Steve Ford: Yes.
Q14 Meg Hillier: My worry then, with the NHS proposals and shape of the NHS, is that that fragmentation will get worse. I do not know whether you have any thoughts about that. The value for money, whatever you do now, if it is broken up, will be difficult to keep track of.
Steve Ford: To answer that, I think I would go back to the point about what a good target could be, because I think that we are seeing here a 32% increase in emergency admissions, which for someone living with a neurological condition is a disaster. I think it would be great for the service-the joined-up services of social care and the NHS-to have a target, an outcome, which is about reducing emergency admissions.
That means the whole system has to work together in a completely different way. We have to make sure that the kinds of things that Dr Pollock has been talking about, using the work force in different ways, are done. It has to be completely refashioned. If you had that kind of target, the NHS Commissioning Board could set out some good models of good practice, the third sector could really be mobilised to add support to all of this, and we could see some real rapid change, which would have a massive impact on people’s lives, just through having that one measure, so that people-NHS chief executives, clinical commissioning groups, social services directors-knew that they were accountable for that kind of target. It could make a massive difference.
Q15 Meg Hillier: Accountability seems to be a very big part of it. In the past I cared for two disabled adults, and at one point I worked out there were 13 different agencies that I was having to engage with on their behalf. The complications of that must be immense if you have a neurological condition, which perhaps leads to other disability. Then there are the carers, as well. What is the target you would like to see? I like this idea-the value for money in having what you called the navigator role. I think they do that with diabetes similarly, and there has been some progress looking at that role. Have you, or has anyone, done an analysis of what that costs? Dr Pollock, you talked about your example in Kent. Have you done a full analysis of the costs of that, taking out the costs of the emergency admissions that are reduced as a result, and the softer costs-the support that family and others have to provide, particularly, for instance, when the person has other disabilities, or is a child?
Dr Pollock: No.
Steve Ford: There is lots of evidence; the charities have got lots of evidence of where investing in specialist nurses, for example, has reduced admissions and the amount of consultant work load.
Q16 Meg Hillier: Which begs the question have the Government looked at that? Clearly it has not worked very well.
Steve Ford: There was no mid-point review of the National Service Framework, but we have been doing work on that. Neurological Commissioning Support, a body set up by three of the neurological charities to help the commissioning process, has done a lot of work on that. I was reading this morning of some work they are now doing in Surrey, where they have got the neurological community together and they put a plan together that improves services and reduces costs. That is the kind of focus on neurology that can lead to that win-win situation.
Q17 Jackie Doyle-Price: This is very much further to that. Everything you have been saying about outcomes is absolutely spot-on. I think the key is making sure that you have the right people challenging those outcomes. With that in mind, how do you see the health and well-being boards playing that role? Do you think it is currently high enough on their radar for them to realise that they need to be looking at this?
Steve Ford: I do not think it is currently. We have no evidence, looking around, that we have seen any areas focusing on neurology, first because it is not part of the general set of priorities and secondly because it is really complex. That is where we can do some work to help people find some of the practical solutions to improve this, and also by putting some accountability in the system. That to me is why having a kind of shared outcome of reducing emergency admissions could be a very powerful way of unlocking the system.
Q18 Jackie Doyle-Price: On that, certainly in my locality, I find that lots of the local groups representing sectors find it very difficult: when things are dictated from the centre in the health service they have expectations that they are going to get enhanced care; then it does not get delivered, and they do not have a way of challenging that. I think that obviously is a role we expect the health and well-being boards to fulfil. Do you see that as well?
Steve Ford: Yes, definitely. That is a really good example. There are lots of local groups that do not just want to challenge; they want to play a really proactive role in designing the solutions. Hopefully the structures can enable that increased level of service-user engagement.
Jackie Doyle-Price: In some respects, we have raised their expectations with this strategy and more money, but it has not really been delivered.
Q19 Meg Hillier: May I ask one simple question? Do you have a figure, or could you get us a figure-perhaps the NAO could-for the actual cost of an emergency admission? That is quite key. Obviously it is not great for the individual unless there is a real need for it, but what is the actual cost?
Steve Ford: The tariff is anywhere between £2,000 and £4,000, depending on precisely-
Q20 Meg Hillier: That is different from the cost.
Steve Ford: Well, tariff prices ought to equal costs in the health service.
Q21 Chair: David, do you want to add to that?
David Moon: We could look at doing something on that.
Chair: Austin has some questions, and then I will ask you for any final thoughts. I know it is a quick session, but we have the main session with the accounting officers.
Q22 Austin Mitchell: The witnesses have given us some powerful evidence that concurs with the very effective Report. Our problem is where we go now to secure value for money. I take it that there is not going to be another pot of money-the first having been squandered-in the present climate. You have had it. So where do we go now? From what you are saying, I get the national clinical director, national priorities and targets on readmissions, but what else?
Dr Pollock: The Chair has done me the honour of describing me as an old-style Stalinist, which is a very unusual position for a neurologist. In fact, I am not a Stalinist.
Austin Mitchell: That is my job.
Dr Pollock: I am very happy for neurological services to be delivered at a local level. I believe that the idea that putting money out of the hospitals and into the community has a lot to commend it. The trick for the Department of Health is to make sure that the new structures they are developing do not treat neurology as simple when it is clear from all of our discussions that there are complications. Therefore, it does need to be looked at in a way that gives proper guidance and weight to the development of outcomes.
As I said, if we were just to take the simple outcome measure of death rates in epilepsy, we should pack up and go home. They are going up the more money we spend. So what I plead for is more strength and direction within the Department of Health about understanding the problem. That has just not been there. Nobody listens to the submissions because nobody has the grip and the responsibility to do so. How you deliver a particular programme could be left safely to a local commissioning group, provided that it is properly informed and given a clear remit about what is and is not acceptable. Whether you have a geriatrician or a neurologist running a Parkinson’s disease programme in the community matters only inasmuch as which is the best service for the particular area.
Steve Ford: My closing comment is that we could be here again in three years having exactly the same conversation unless something different happens. We do not see that there is anything currently within the system that is going to change the problems that the NAO so powerfully describes. We will see emergency admissions continue to rise, and there will not be that kind of focus on neurology.
Q23 Chair: The things you really want to change are?
Steve Ford: The things we want to change are to have this outcomes framework. We want a clear vision, with some targets within it, of how neurology services should be provided, with some leadership, levers to support these emerging clinical commissioning groups to implement all the changes and some accountability in the system. If we were to get that, we would see rapid change.
Q24 Meg Hillier: What targets? Who should be accountable? Should it be different people in different areas? Should it be the neurologists? Should it be the community? The diabetes clinicians I have spoken to said that they did not believe how much of a difference it would make giving GPs targets. It has overnight transformed the system.
Steve Ford: Exactly. I think it has to be the commissioners who are accountable. When someone is living with a neurological condition, with all of the challenges, with the 22 different health professionals they need to see and all of that, it is up to the commissioners to ensure that they are securing for them a package of care that works and is co-ordinated.
Q25 Fiona Mactaggart: One reason we are a little sceptical about that is that we know how varied provision is around the country. I compared spending in my constituency with that of Mr Bacon who normally sits next to me. His gets 50% more than my constituency. That is not in the least uncommon. Local accountability is not delivering equal spending. Fair enough if it had equal standards, but it is not doing that at any level at the moment. Can we do it with a locally accountable system?
Steve Ford: That is the system we have and we have to make it work.
Q26 Fiona Mactaggart: Your view is, faute de mieux, that we have to.
Steve Ford: Part of that, but actually there is a massive appetite for ownership locally. We see that there are lots of neurologists like Dr Pollock who want the opportunity to reshape services, working with local patient groups. The problem is that we have not been able to get on the agenda of commissioning groups to do that kind of work. If we put some impetus behind this, make it a priority, we shall unlock a tremendous amount of creative forces.
Q27 Chair: Finally, what is the population profile that you need for a neurological service? I know that is a bit crude, but what would it be?
Dr Pollock: At the end of our report from the Association of British Neurologists and the Royal College of Physicians, we made a first attempt to show how commissioning should work for a population of 500,000. We think 500,000 is a good number because it is large enough to avoid single-handed nurse practitioners and so on, and you can get some kind of momentum behind your programme. It allows you to have some direct management of in-patient neurologists, but it is small enough to keep yourself in a local environment.
That would be either working round one acute trust, or maybe two acute trusts coming together to say, "We will provide the in-patients and you can provide the Parkinson’s disease programme or the MS programme, because you are better equipped to do it." I think 500,000 is a good number to work with. I am worried that if we are just dealing with clinical commissioning groups of 50,000 we will lose time before they work out that actually they are going to have to coalesce.
Steve Ford: Networks are really important.
Q28 Meg Hillier: You talked about the stroke model earlier. Do you think that works? I was sold on the stroke model when the benefits to patients were explained to me-and the costs helped, as well. Do you think that model would work? You talked about 500,000; that is about two London boroughs-I am a London MP. That would mean one acute trust would be leading and the other services-
Dr Pollock: Yes.
Chair: Wouldn’t it be through the commissioning? But it is quite useful to have that in terms of how we question the others.
Good. Thank you very much for your clear and helpful evidence.
Examination of Witnesses
Witnesses: Sir David Nicholson, Chief Executive, NHS, Una O’Brien, Permanent Secretary, Department of Health, and Dr Chris Clough, Chair, National Clinical Advisory Team, gave evidence.
Q29 Chair: Welcome. Looking at the present structure, David Nicholson, you are responsible for the past; Una, you will be responsible for the future.
Una O'Brien: I think we are jointly responsible for the future, if I may say so.
Sir David Nicholson: But only I am responsible for the past.
Q30 Chair: This is a difficult area, but it is a very interesting area. I have probably have had more lobbying on this subject than I have had on anything in the times that I have been Chair, so I would really appreciate really specific and direct comments in the answers-no waffle. I will interrupt if I feel that we are not getting anywhere. Is that all right? They are the terms of engagement.
One of the many letters that I had about this inquiry, which was from four of the all-party parliamentary groups-on Parkinson’s, MND, MS and ME-said, "Many neurological services are not fit for purpose due, in part, to inefficient and poorly monitored use of public funds". Comment.
Sir David Nicholson: There is no doubt that any of the funds that we use in the NHS could be better. We could improve the value for money on almost everything you could possibly imagine. Over the last period, we have seen the attempt to implement a National Service Framework, which-
Q31 Chair: This is worse. The cancer strategy people have been praising the stroke strategy. This was another strategy, which on all sorts of indicators seems to be-we will come to why you had no data and why there has been no monitoring of it later, but it is unusual for me to see in a Report such a clear statement from the NAO around failure to get value for money.
Sir David Nicholson: But it was a different kind of National Service Framework. At the time, as you remember, the Government were moving away from the idea of top-down; you identify a national tsar, you give them a bag of money, you give them national targets and you drive change.
Q32 Chair: That makes it even scarier.
Sir David Nicholson: The Government were moving to a position where they believed that a better model of change would be to drive it from local circumstances, hence the idea that you would set out a set of quality standards for a service, and essentially, with support, let people get on with it.
Q33 Chair: I understand all that. It was done under the Government of which I was a member, but the interesting thing about this whole area is that will be the pattern of service provision under the Health and Social Care Bill. So if things have gone so badly wrong here, we’ve gotta think-which is why I want to be really specific this afternoon-about your analysis of why you didn’t perform better, accepting entirely it was a different framework, and what you have learnt from it and what you are going to change as we move forward.
Sir David Nicholson: We have learned quite a lot from it. This is part of the dilemma in terms of the discussion about this kind of issue in the NHS. People take positions very quickly. It is either all top-down and you are accused of being a Stalinist or it’s all what you have given up-you give the money out and let people do what they like. But actually when you want to make change, you have to do bits of both. What we have learnt from those circumstances-my take on the neurological long-term position is that we put too much store on the ability of local people suddenly to rise to a challenge that we had had. Of course, in those areas where you had really good clinical leadership and really good people who were engaged, you got good services. In those places where you didn’t, you didn’t. That is a very powerful lesson that we can learn. So what is very important to us as we go forward is that we make sure that we have the right amount of national and central work on this, as well as the local.
Q34 Chair: Are you considering a national clinical director?
Sir David Nicholson: Well, at the moment the NHS Commissioning Board is looking at the way it manages itself. As part of that, we are looking at the way we organise ourselves. What we are trying to do is organise ourselves around the major elements of the outcomes framework. So we will have a top-line clinician responsible for the drive on reducing mortality. We will have one who is responsible for driving the quality of life for people with long-term conditions. We will have one responsible for what is described as episodic care, one for patient experience and one for patient safety. That is the way the organisation will be set up. Within that, of course, there will be clinicians who will work with those people. We haven’t yet come to a conclusion about how we are going to deploy our resources.
As you know, in terms of quality standards, there are about 150 different conditions that we could have clinical tsars for, so we have to think about that very carefully. But what is clear to me is that-Steve and other people are absolutely right-we need to strengthen the national leadership in order to make the change happen. Leaving it to local will not deliver.
Q35 Chair: I want to push you a little on that. I hear that, and I think the problem is that Chris Clough has responsibility for long-term conditions-we will come to him in a minute-and neurology gets sort of ignored in that. From the evidence we had from the two people in the field, what was clear was that a real focus on neurological conditions is what is needed with outcomes around neurological conditions. Very helpfully, we heard about reduced emergency admissions, access to specialist nurses, a clinical director and personalised care plans. Those were the ideas that came out of the evidence we just heard. I don’t want those hidden in something for people with long-term conditions, because that appears to me to be where we went wrong under the old strategy.
Sir David Nicholson: But I do think the outcomes framework is very powerful in this, in the sense that it sets out improvements in the quality of life of people with long-term conditions, as an outcome.
Q36 Chair: It is very vague.
Sir David Nicholson: I don’t think it is. It sets out a series of ways in which we are going to measure that, and you can in that measurement identify those people with long-term neurological conditions. For example, part of the way we will measure it is via the GP survey-the survey of more than 2 million patients that we do. In that we will use the questions that have been well researched and evidenced across Europe for how you would measure the quality of life of people with neurological conditions. People will identify the answers and that will be reported both locally and nationally, so we will be able to track that over time. So that is in the outcomes framework.
The other thing-this speaks particularly to the point about variation-is that, as you know, as part of the development of the work that came out of High Quality Care for All, the Ara Darzi work, we would identify quality standards that use all the evidence to identify quality standards. NICE would do that as an evidence-based objective body. It is currently designing three: one for people with motor neurone disease, one for Parkinson’s disease and one for multiple sclerosis1. Those quality standards will be short documents-15 pages, perhaps. There will be a number of measures within all that on which we will hold clinical commissioning groups to account for delivering improvements over time. So I think there are national things in the system that I think will help and will expose the issues that have been identified very well.
Q37 Chair: We heard at the end that you need a population of about half a million to make sense in services for neurological conditions. The commissioning groups are rarely going to be that big, so that leaves you in charge of commissioning with a bit of a problem. How are you going to tackle that?
Sir David Nicholson: Every day that goes by, the clinical commissioning groups get slightly larger, I have to say. There are some that are over 500,000, as it happens, but obviously that is not common across the NHS as a whole. What we know from commissioning, with any sort of condition, is that there is no right population for it. Even though half a million was identified as being suitable for neurology, for certain neurological conditions, you can have a smaller population, and for some, you can have one even larger than half a million. The issue for us is, how do we flexibly use the commissioners to do that?
Clinical commissioning groups have to go through an authorisation process for us, as a Commissioning Board, to say, "Yes, we think you are capable of commissioning." As part of that, groups have to go through a process of what we describe as collaborative commissioning. They have to show how they are working together with other clinical commissioning groups to create a population to deal with some of these conditions. That is part of the process. We will be talking to the kinds of organisations that are represented here today about authorisation, so people can make comments. That is a good process to take things forward.
Q38 Chair: If we come back to this in two years’ time, having looked at the disaster of the past, what would you want us to measure to show some improvement?
Sir David Nicholson: I would want to see many of the things that were identified earlier, which were absolutely right. We would want to see a reduction in the number of emergency admissions across this group and across most groups with long-term conditions. That is part of our strategy going forward. We would want to see progress in terms of the quality standards identified, but more important, in all that, we would want to see demonstrable progress on the quality of life of people with the long-term conditions that we have identified.
Q39 Chair: Which you measure how?
Sir David Nicholson: We measure it by asking the individuals. There is a mechanism that you can use to get that data.
Q40 Chair: Things like specialist nurses and personalised care plans-
Sir David Nicholson: Personalised care plans would be an important part of that. Indeed, we do measure that at the-
Q41 Chair: Only 22% or something at the moment.
Sir David Nicholson: We do a survey of literally millions of patients, which gives a much higher figure than that, but I will not argue with the NAO’s figures. Certainly, that is an indicator of where we are.
I think we would draw the line at inputs. That is the issue that we have struggled with before. It is up to local organisations to decide how many staff they will have and how they will deploy them.
Q42 Chair: No, but you might say access to a nurse-
Sir David Nicholson: Access to a nurse?
Chair: Access-and then we will come back again, because there is a great variation. You have to think about variation.
Q43 Amyas Morse: Reflecting on what Sir David was saying about measurement, quite a lot of the measures that we have been talking about have a composite feel, therefore you imagine that they get meaningful over time. But one or two things that we heard testimony about are clear signs that things are going badly wrong-if emergency admissions are shooting up, for example. With things like that, you imagine that you would want to be able to react rather more short term. By react, I do not mean necessarily taking over services; I am not thinking that at all. Simply, from what we have heard and what is in our Report, there seem to be some measures that you take as a bit of a tripwire-you think, if this is going the wrong way, people should be asking some pretty immediate questions. Will there be a means of getting that more short-term measure? When do you need at least to step in and ask some questions?
Sir David Nicholson: I understand. First, I want very gently to push back a little on your point about emergency admissions. One of the things about this particular group of patients-we knew it was the case when the Government set up the national service framework-was that people thought that progress would be made through the generic changes that were happening in the service-in particular, access to diagnostics. The figures in your Report dramatically show how more people have access to diagnostics and quicker access to services. What clearly comes out of that is a better identification of people. What you are seeing here is not just an increase in emergency admissions being necessarily a bad thing-but overall it is-you are also seeing a lot more people being identified as having neurological conditions, which slightly overstates it. The other thing is that we want to get more people in who suffer from a TIA or a mini-stroke, so it is slightly more complicated.
Having said that, you are absolutely right about some of the composite indicators. It takes many years to get to that place. The way that we are going to deal with that is we are going to develop, in concert with this, something called the commissioning outcomes framework, which, in a sense, takes these things and looks at what the short-term changes are that will happen and which we will monitor. We are going to hold commissioning groups to account for that, in the short term.
Q44 Chair: Give us an example. What does that mean in practice in this area?
Sir David Nicholson: In this area, it could be emergency readmissions, for example. We could say to the clinical commissioning groups, "We want to see a demonstrable and significant reduction in readmissions into hospital." You can measure that quarterly. You don’t need to measure that every week. We would incentivise the clinical commissioning group to enable them to do that. That is a way in which you could turn a bigger outcome into a particular indicator.
Q45 Fiona Mactaggart: I thought that the framework that we are talking about did exactly that, trying to look at the targets that it had. I thought that that was one of them, but, in fact, it has gone the other way. Am I wrong?
Sir David Nicholson: I’m sorry?
Q46 Fiona Mactaggart: I thought that that was exactly what was planned in the existing framework, and the existing framework has gone in the opposite direction.
Sir David Nicholson: What happened in the public service agreements-
Q47 Fiona Mactaggart: Reducing emergency bed days by 5% is one of the original targets.
Sir David Nicholson: And we did more than that. We reduced it by significantly more than that.
Q48 Fiona Mactaggart: But then there was an increase in readmissions.
Sir David Nicholson: And there has been an increase in readmissions, which gives you a flavour of how difficult it is sometimes to select a number that you can focus on and which will deal with everything else. It is absolutely true: we have a rising number of emergency readmissions in the NHS at the moment, which is a big problem, both for the patients and for how we operate.
Q49 Fiona Mactaggart: And it is rising faster in neurology than it is in other conditions.
Sir David Nicholson: I do not know whether Chris wants to say anything about that, but I would query that. I am not absolutely sure that that is the case. In a sense, it is not relevant, because the number of readmissions is going up and we need to get it down. What we are doing at the moment is examining every single readmission, from every hospital, that is happening in the NHS to assess, first of all, whether we think it is a reasonable and clinically required readmission. We are only paying hospitals for those that we think are clinically required, which is a major incentive and a major driver of change in NHS at the moment.
Q50 Chair: But the unintended consequence of that, as we talked about earlier, could be that you get people not being discharged, because you are scared you will not get the money when they are readmitted. There also could be an unintended consequence of social care not meeting its bit of the funding, because the hospital will pick it up and you do not have to pay for it.
Sir David Nicholson: You reflect there the dangers of the work and the potential that we get in all of that. That is why you have to do all those things together. You have to have your quality standards, you have to have your outcome framework, you have to have your commissioning outcomes, you have to have the contractual arrangements between hospitals and you need the right people in place. You need all those things lined up to deliver change.
Q51 Chair: So you have to be quite Stalinist.
Sir David Nicholson: I do not think that you have to be a Stalinist, but you have to be clear about what you need to be clear about. The point that I am trying to make is that if you take the quality standards that are put in the NSF for long-term conditions, we put them out into the service and we let people get on and look at them. We have no mechanism for monitoring them and we have no mechanism for holding people to account.
Q52 Chair: Exactly.
Sir David Nicholson: We trusted that the system would drive change, but it is not going to work. We have learned that.
Q53 Fiona Mactaggart: Do we get as good value for money from this area of the health service’s work as we do for our CHD work, for our work on cancer and for our work on stroke?
Sir David Nicholson: It is more difficult to measure this one. That has been part of the problem.
Q54 Fiona Mactaggart: So that is why you say in paragraph 26, "It is the Department’s view that there is insufficient evidence to support a conclusion that current spending on neurological health and social services is not value for money." I have always discovered in politics that when people use double negatives, you should not trust what they are saying.
Sir David Nicholson: You should trust what I am saying.
Chair: Is it value for money?
Sir David Nicholson: I think it is too early to tell.
Q55 Fiona Mactaggart: This has existed since 2005.
Sir David Nicholson: Yes, but it is a 10-year strategy. That is the point.
Q56 Chair: And you cancelled the mid-term review to see whether it was working.
Sir David Nicholson: We never said we were going to have one, apparently.
Sir David Nicholson: We apparently never said we would have one.
Fiona Mactaggart: So the fact that you were accused of cancelling it was made up by someone? I don’t think so.
Sir David Nicholson: Can I go back to the point that the thing about cancer, coronary heart disease, stroke-all of those things-is that they were the priorities of the Government, and they were the priorities of the Government because they were the big killers. They are the things that kill lots and lots of patients.
Q57 Austin Mitchell: Are you saying neurology was not a priority?
Sir David Nicholson: It was not a priority. It has not appeared in any of the operating frameworks over the past five years that any of the Governments have produced. That is true. It has not been a national priority in that sense. That is absolutely true.
Q58 Chair: Why did you do a national service framework for it? What was behind that?
Sir David Nicholson: We have done lots of frameworks. There are lots of them around that have been produced over time. I am not saying that because it is not a priority you should not do anything about it; you should. But if you ask me whether it has been one of the four or five things that the Government have said needs changing, then no, they have not. Part of the reason for that is because the focus has been on saving lives, and that is a relatively straightforward thing to measure. Quality of life, for people with long-term conditions, is quite a difficult one. In a sense, that is why we had some problems doing it, but I think we are getting to a place now where we can do it and where we can focus our attention on taking it forward.
Q59 Fiona Mactaggart: Sir David, it seems to me that not only is it not one of the Government’s actual priorities, but it is almost the opposite in as far as if you are referred to a hospital with a neurological condition, it is unlikely that you are going to see a specialist. If you compare that with admissions to physician wards in hospitals, nearly everybody else will see a specialist in their condition. They will see a respiratory or a gastroenterology specialist, to take two things which are not in your absolute priorities. Yet, if their condition is neurological, frequently they will not be admitted by a neurology consultant. That is the common experience of people. That sounds to me not only as if it is not a priority; it sounds to me as if it is the opposite of a priority. The number of consultants per population in this country is 1:125,000. The European average is 1:20,000. Not only are we not doing as well as we ought to; we are doing quite frighteningly badly, I would suggest.
Sir David Nicholson: I will let Chris have a word about that. Fundamentally, I agree that too many people are being admitted in an unselected way to acute hospitals. It is bad for them and it does not provide great value for money for the NHS. For example, over the past six months, the number of emergency admissions to hospitals in the NHS has gone down by 1.9%, for the first time in many, many years; it has been going up at 3%. That is partly because of the way in which we have tried to manage long-term conditions better in the community-not particularly this particular group, but people across the NHS-because it is vital for us to do that for the quality of service for patients, and also because we simply cannot afford for the rise in emergency admissions to continue.
Q60 Fiona Mactaggart: We are a value-for-money Committee, so we want to reduce those emergency admissions. We are with you. The reason why we focused on neurological conditions, rather than on all long-term conditions, is because this is the area where, obviously, we are getting the value for money frighteningly wrong.
Dr Clough: I have a number of things to say. Your description of the disaster I just do not recognise. As a front-line clinician, I really do not recognise that. What I have seen in my own practice is actually improving services for neurological patients.
Q61 Chair: Hang on. Before you go on, the 2011 study by the Royal College of Physicians-I do not know if you are a member of it-concluded there had been no major improvement; an audit of 11 sites by the neurological commissioning unit found that not one had fully met a single quality requirement; emergency admissions and A and E are up; only two thirds of people with Parkinson’s are seen by a specialist within six weeks; one third are not given proper advice and support when they have MS; the Oxford university survey of a number of things showed that only 22% had a personal care plan; and only 5% of NHS and LA budgets are pooled. I could go on and on. None of those indicators is good.
Dr Clough: There are good things and bad things. Let’s face it. The audit Report you might call a bit of a curate’s egg, because it does report on some good things-
Q62 Chair: That is a heck of a lot. Do not come and tell us that it is good.
Dr Clough: You obviously do not ask your barber if you need a haircut. In other words, if you ask a group of people with neurological conditions whether the services meet their requirements to 100%, which is what the audit Report did, they are largely going to say, "Well, maybe not."
Chair: Can I just stop you there? That is absolutely outrageous.
Q63 Fiona Mactaggart: I have had cancer and I have MS, and I have to say that the services that I have had because of my cancer have been excellent and completely wonderful. I would say that they could beat anyone in the world. The treatment that I have had for neurology has, in many cases, not been.
Dr Clough: I am very sorry to hear that.
Q64 Fiona Mactaggart: That is an anecdote, but I am speaking from the point of view of the patient to whom you referred.
Dr Clough: Okay. Let’s talk about-
Q65 Chair: Can I just say that I think it is hugely important that the NHS puts the patient at the heart of what they do? If the patient’s views are that they are not getting what they want, you, as the clinician, should jolly well listen to that. I feel that that is absolutely imperative in all public services, particularly in health.
Dr Clough: Yes, but the methodology of using 100% met is not a very good methodology, because nobody will ever say that. It is rather like the bar of chocolate, is it not? You can send it back if it did not meet your-
Chair: No, it is not. If people have a good service, they will say so. That is just not true.
Q66 Mr Bacon: It is an interesting reflection on your overall philosophy. I know that we are not discussing businesses, but many organisations, in seeking to measure the satisfaction of those who use them, including many private sector organisations, would aspire to 100%, and if they got to 98% or 98.5%-the Chair mentions Marks & Spencer-they would use that as the starting point and then study constantly where they were falling short. Your statement about not asking your barber whether you need a haircut suggests that all the things that the National Audit Office studies produce equally poor reports from those who are using them. That is simply not the case.
Dr Clough: Of course, you should take the entirety of the evidence. The audit Report has based a lot of its conclusions about value for money on emergency admissions, and Sir David has already alluded to this and said that the increase in emergency admissions is not what you would want to see. However, what it does is prompt a question. You have to look under the stone and say, "Why did that occur?" The challenge is to understand why emergency admissions have risen within neurology, and it is of course a very complex answer. Complex answers are not always what politicians want to hear. The answer is that-
Q67 Chair: I think, actually, us politicians just want to hear that people working in the NHS put the patient, not the clinician, at the heart of what they do.
Dr Clough: And that is exactly what we are trying to do.
Chair: It does not sound like it.
Q68 Amyas Morse: Is it not true that people really argued and pleaded that you should put baseline metrics in place at the start of this process? Is that not true? Are you really saying that people did not ask for that? We have evidence that there were a lot of requests from the clinical community that there should be a clear measurement baseline put in place and that those requests were not acceded to.
Sir David Nicholson: I can, hopefully, help with all of this. In terms of the national service framework and the way that it was constructed, it was not done by accident. It was done on purpose. People weighed up the kinds of issue that you have described, and they said that we should have a local audit, using a national tool. If you are asking me whether, if we set out to do it again, we would do it like that, we would not. It is essential that you have a baseline, because how on earth can you then measure progress? That has bedevilled this process.
I am not in any way suggesting that the services that we provide are adequate. It is absolutely central to the NHS to continuously improve. If you look at the outcomes framework, the main determinant of our success as an NHS is the quality of life of the people with long-term conditions. That is determined by what they say. That is what is in the outcomes framework, and that is what we want to take forward.
Q69 Fiona Mactaggart: I want you to look at figure 7, which compares the different national service frameworks. Sir David, you talked about having a system where you might measure the outcomes in terms of particular aspects of people’s experience when they have long-term conditions. I have been pressing the issue about the number of neurologists, and not by accident. I suspect that these particular aspects will be mis-measured in relation to neurological conditions because-I never thought I would argue for more consultant neurologists as I have had such horrible experiences with them-there are insufficient numbers of consultant neurologists or GPs with any form of neurological training. That is the first problem.
So figure 7 tells me that if you have someone like Professor Mike Richards, who is a clinical lead and has some clinical respect in his community, they can guide people into making cost-effective decisions. I remember Mike once saying that one of the things that one of the cancer collaboratives did was pass on referrals by text rather than fax, or something like that, and it saved in that case thousands of pounds and weeks of patient time. So it is not necessarily rocket science, but it requires someone who has the clinical understanding of that field. My absolute terror is that your proposal that we will see how people deal with this bit of their condition and that bit of their condition will create on a national level the thing that people with neurological conditions face on a local level, which is that you can’t find which bit of the system is going to deal with what you need. Why don’t you just learn from what you’ve done well, produce value for money and do it for neurology? Una should perhaps answer this as she is responsible for the future.
Chair: Una, do you want to answer that? You have been very silent. Una, only if you want to.
Una O'Brien: The first thing to say is that the reform programme, particularly the outcomes framework, is a fundamental and systematic approach to addressing the issues that were raised in the first part of this session and some of the things that we have been talking about now. So there is much more to be brought out about that. We have not had an opportunity to check with you in full on that.
Q70 Chair: But there is a specific question that Fiona asked.
Una O'Brien: I want to come on to Fiona’s question and figure 7. My own experience of observing these frameworks from when I was working in the NHS, and now back in the Department, is that it is the combination of factors that has led to success. I have huge respect for the national clinical directors as great leaders of their respective areas of care. My observation is that it is a combination. It is where the issues have been easy to tackle. It is where we have had a very clear objective and where there has been, as David said, the model that was used-
Q71 Fiona Mactaggart: So shouldn’t the combination include national clinical leadership?
Una O'Brien: Yes. The model that was used in the early part of the decade was very much to pour a lot of money behind these as well. So there was one model that went at those particular illnesses and conditions, which led to improvement in those. The point about the NHS is that we are responsible for everybody. The problem with that model is that by the time you get round to applying this approach to everybody, you are leaving people out and there are rare conditions and other groups that aren’t getting that attention. I think that is one of the fundamental reasons why we need systematic reform, rather than working our way through each of these in turn.
Q72 Chair: To be absolutely honest, the best is the enemy of the good there. As I read this Report, 10% of people have a neurological condition. That is a heck of a lot. You are spending a heck of a lot of money on it. It’s 4.5% of NHS expenditure. It is quite a lot of money. It seems to me that if you’ve got one in 10 of us lot having to cope with people like Dr Clough at some point, it might help if we had a clinical director, which did work. It has worked. The evidence is there that you know it works. I just can’t see the resistance to using that model.
Una O'Brien: It will be for the Commissioning Board to determine how they use the clinical advice and clinical networks. I won’t be prescribing it one way or the other because I think the key thing-
Q73 Fiona Mactaggart: But this hasn’t been prescribed and it has failed. You are saying that you are going to use this model, which we have profound evidence has not worked as well as other models, rather than another model. That seems very odd.
Una O'Brien: We are not using this model, no.
Sir David Nicholson: It is absolutely not using this model.
Q74 Austin Mitchell: I think you are in a hole that is getting deeper, so you should stop digging. I also think, Sir David, that you are a bit devious by putting this on a philosophical plane as part of a transition from Stalinism to localism. I say this as the last surviving Stalinist, I suppose-I have been called in by the shadow Chancellor for remedial economics at 5 o’clock, so I will have to pursue this quickly-but that disguises what was essentially a failure of the Department. It was a failure of the Department not to attach sufficient importance to neurological conditions. All the evidence we have had from the Neurological Alliance and from Pollock and Ford, who appeared earlier, is that there is no clinical director, no clinical drive from the top and no expertise at the top. All the warning signals that came up from the localities are that readmissions and emergency admissions were up twice the rate of other areas. Emergency readmissions, all of them very expensive, were rising substantially, too. All of that was ignored while you blindly handed out the money, which was effectively wasted. So you got no effective control of value for money or knowledge of whether the money was being spent usefully. That is a failure of the centre, not of localism.
Sir David Nicholson: Well, I could say a whole series of things, but I will start at the beginning. I think I have already acknowledged that the model of change used to develop the national service framework for people with long-term neurological conditions was not adequate for the changes that we needed to make. That was the policy at the time. It was not done by accident; it was done on purpose, because there was a belief at that time that that was the best way to get the change.
Q75 Austin Mitchell: But surely the groups that were advising us were also saying to you, "This will not work unless you do so and so."
Sir David Nicholson: Well, I get lots of people telling me that the cancer strategy does not work either. You always get people who will say-
Q76 Austin Mitchell: But that’s Stalinism that worked!
Sir David Nicholson: The cancer strategy is very interesting because what we have been really good at doing is delivering better services for patients-those kinds of treatment services. Where we have struggled is in early diagnosis. Mike Richards himself would say that that is a generic problem in the NHS; it is not a problem specific to cancer. What Mike and the clinical teams are doing now is looking across all of diagnosis, including this kind of diagnosis, to see what are the common things about how we can speed it up. So, for example, access to MRI scanning for general practitioners. All those sorts of things come out of that generic approach.
I acknowledge absolutely that the model of change was not right, but I think that the changes we brought in as part of high-quality care for all, the Ara Darzi work, and the changes we are making now make a much more coherent model of change that includes a strong centre that sets out what the standards are and gives people local flexibility about how they deliver it. I think this is a better opportunity than what we had in 2005.
Q77 Austin Mitchell: But at the start of this strategy the centre was not strong enough, effective enough or knowledgeable enough to see whether we were getting value for money.
Sir David Nicholson: The Government’s view was that we had to move away from top-down targets. That was a very strongly held view, and it was not just the Government that held that view. Lots of clinicians have argued that, too. My experience of this is that clinicians are very keen on targets about their own service but less keen on others. Nevertheless, that was the case at the time.
Q78 Austin Mitchell: There were available targets, and they were flashing red-admissions, readmissions.
Dr Clough: Again, you have got to understand emergency admissions, because you have based a lot on emergency admissions. You have to understand that what I see now coming into hospital under my care are patients who are much older and much more complex with multiple morbidity. So the increase in neurological emergency admissions may be part of a demographic of an ageing population, but also, because of the 18-week RTT, we are now diagnosing these people, whereas perhaps before, someone in their 80s who had a mini-stroke or something like that might have been left at home without a diagnosis. Now they are coming into hospital, and that is probably appropriate, because we are now preventing strokes by people coming into hospital. There are a whole variety and a raft of reasons why your emergency admissions are going up.
Q79 Chair: There have been shaking heads from our expert witness behind you, as you were saying that. No one knows who is right-whether you are right or our expert witness before was right-so what is important is that we need the evidence base; we need the data which was lacking.
Sir David Nicholson: Absolutely.
Chair: Was that where you were going, Nick? Go on then.
Q80 Nick Smith: That was sort of where I was going.
Miss O’Brien, throughout the Report, there were references to poor data. On this Committee we have placed a lot of emphasis on consumer or patient voice, which is really important for improving outcomes. In his evidence, Mr Nicholson said that the GP survey will mean that the quality of life of people with long-term conditions will be improved. How will the data that you get from that GP survey lead to improved outcomes for people with long-term conditions like this?
Una O'Brien: The essential thing that we have to do is to establish a baseline from which we can measure progress. If I may go for a moment, if you like, inside the building called the outcomes framework, that is the second of those five major planks referred to by David, which is improving the quality of life for people with long-term conditions.
The plan at the moment contains a number of indicators. We will build those indicators and add to the framework year on year as we gain confidence that there is a relationship between the measure that we are using and the impact that it is having on people’s lives. So when it comes to that particular measure that you asked me about-the GP survey-the way it is constructed at the moment is that we ask people to self-report on five themes: their mobility, their support for self-care, their usual activities, pain and discomfort, and anxiety and depression. There is a list on which they can self-define what their condition is; there is quite a long list of conditions, and one of the conditions that people can identify as having is a long-term neurological condition.
This will enable us, when we assemble the data, to do multiple analysis. We will be able to assemble the information nationally but also disaggregate it to locality. One of the things that we want to do is to be able to support local commissioners with this sort of data and with time series. Who knows what the percentage is that you are looking for? Actually, myself, I am aiming for 100%. I do want people to be satisfied as taxpayers-as an accounting officer, that is my goal. I may never reach it, but that is what I am after-to gain high levels of satisfaction with their care. What this will really enable us to do, for the first time, is that I will be able to see that data at the centre but I will also know that the clinical commissioning groups in Birmingham, Kent or wherever will all have that information relevant to them.
Q81 Nick Smith: It sounds very good, but it also sounds as if you will be developing it over time, and it will be a long time before patients see the value of it.
Una O'Brien: The great value will come over many years, but I believe and, in fact, I know that you will get value very quickly, because you will have your initial data from the first year’s survey and then you will have comparator data the following year. We need to remain disciplined, enabling those time series to develop, but we also need to keep learning from feedback from patients as to what things are meaningful.
I know myself from being a patient that you can think you are well at one point in time but your condition can change, so we need to be able to develop these measures in a way that reflects the reality of people’s lives. Historically, we have measured inputs and processes. They all have a part to play. But every health system in the world is trying to do this, and I happen to believe that we are as advanced as anybody else. We have the power of a national primary care system that is going to enable us to get at this data much more readily than other systems. It is in development. I don’t want to over-claim for it, but I believe that we are learning the lessons and trying to construct a system of measurement that really reflects the reality of people’s lives.
Q82 Nick Smith: How would you get the commissioning groups to take notice of the data and to implement actions on the basis of them?
Una O’Brien: If I may, I would like to briefly set out the architecture of how that accountability system works. First and foremost, the relationship between the Secretary of State, the Department of Health and the Commissioning Board-
Nick Smith: Specifically on the use of this data to improve local services, given the evidence you have. Go straight into it.
Una O’Brien: The outcomes framework is centre-stage inside the mandate. It is not the only thing in the mandate, but it is centre-stage, and all that goes with it, in terms of the requirements on the use of information. We want to do this in a way that empowers the Commissioning Board to take that agenda and build on it. This is why we are going to strengthen the relationship between the information centre and the Commissioning Board, so that the Commissioning Board can nationally be as supportive as possible of the clinical commissioning groups.
David may want to say something about how he intends to build that relationship between the headquarters, if you like, of the Commissioning Board and what the clinical commissioning groups actually do and how they are held to account for that.
Sir David Nicholson: We will use all the levers at our disposal. The first lever that we have is the setting of the commissioning outcomes framework. We will set out what improvements we expect for each clinical commissioning group in these areas. That could range from continuous improvement, which is, "You have to show a bit of improvement," to, "You have to demonstrate a significant amount of improvement." We will hold them to account through the general management processes you would expect, but also by the allocation of incentive resources to them to make that happen. That is obviously a way of holding them to account.
Secondly, we have the ability to use things such as the quality and outcomes framework for general practice, for individual GPs. We commission primary care directly, so we will be able to identify, through that commissioning process, progress that we would expect general practitioners individually and in partnerships to make.
Q83 Nick Smith: How could you hold the GPs to account on that?
Sir David Nicholson: The clinical commissioning group holds the general practitioners to account for their commissioning activities, but in terms of their primary care activities, we hold them to account through the payment system that we have with general practice.
Q84 Chair: You would withhold payment?
Sir David Nicholson: It depends how you look at it. Some people say we give them incentives; some people say we fine them. It’s whatever, but it is the way they are paid.
Q85 Meg Hillier: Value for money matters to the Committee. I think others have stressed that value for money and patient experience matter, so I was heartened by what you said. But it misses out a large chunk. Social services is not something that the Department of Health controls. There are many, many different therapists who could be involved with somebody with a neurological illness-most are lifelong. If it takes 10 years to get to an improvement, that is a very long time. For some patients, that will be too long. Particularly on the social services point, what are you doing about that? For certain patients, that could be a really big part of their ongoing community care, and you have no control.
Una O’Brien: Absolutely. We have touched on some of these matters before, I know, in this Committee. Again, I would stress the significance of the systematic, whole-scale change that is needed in relation to social care.
Q86 Meg Hillier: Those are big words. What do you mean?
Una O’Brien: For example, the switch that is happening towards personal budgets is, I think, really significant. I have shared with the Committee before some of the evidence that is coming through as we evaluate the personal budget pilots. Interestingly, we have a number of pilots currently under way around personal health budgets. I am expecting the evaluation report to be ready in the autumn.
Q87 Meg Hillier: That would mean someone could buy in a therapy.
Una O’Brien: Yes. This is particularly relevant for people with motor neurone disease or Parkinson’s disease, people who have health and social care needs, who will be able to have self-directed care, to manage their own choices in how their care is organised with the relevant support-if we can make it work, because accountability does matter at that level as much as at the level of millions of pounds.
Q88 Chair: You will remember that we looked at that. One of the weaknesses was that you have no statutory powers to require it, and it is going really slowly. I can’t remember the figures off the top of my head, but it is going really slowly.
Una O'Brien: Yes, and as you know, the Government have said that if they don’t see the progress they are expecting, they will take those powers and will see it through. Their expectations of local authorities are clear and we are monitoring that.
Q89 Chair: So, remind me when you are expecting them.
Una O'Brien: I cannot remember the exact date but our expectation is that there is measurable progress towards the offer of a personal budget for everybody who is judged as eligible for social care. This is a really important piece of progress and I think it is very empowering for people to have that. That has to happen.
As you know, there is a plan for a social care White Paper later in the spring, where we are going to address some of these fundamental issues about quality and access to services. There is also-obviously, it is very live at the moment-a major debate about funding reform for social care, which puts some big systemic changes behind some of the delivery issues that we have got, which cannot be sorted out on a micro basis; you have to take a macro approach to them.
Q90 Meg Hillier: This question is for Sir David and maybe Dr Clough. In other areas, many consultant clinicians have gone out into the community to run clinics, which is massively better for individuals. It takes less time out of their day; it is less of a hassle. I have only just seen the report from the Royal College of Physicians and the Association of British Neurologists, but I am picking up that that does not seem to be happening so much in neurology. Is that true? What can you do about it?
Dr Clough: I agree with your point. A lot of neurology could be done within the community, close to patients’ homes. There is no reason why neurologists could not be employed by CCGs directly to lead services locally. In a sense, the health reforms do give us that opportunity. Perhaps in the past neurologists have been within their citadel, if you like-within the hospitals. We have just been talking about admissions. Clearly, there is a requirement for access to neurological opinion within hospitals. I digress slightly because it picks up a point that one of you touched on earlier about whether patients get to see neurologists in hospital. Of course, the access is variable, but people are trained in neurological conditions, so it is not as if the person receiving the patient into hospital does not have those skills.
I probably have wandered off the point here, but somebody talked about gastroenterologists and cardiologists; well of course the person you see as you come into hospital may be none of those things. They will be somebody who has the skills to receive you with your generic undiagnosed condition acutely. Those are the skills you have as an acute physician or a general medicine physician. Once the diagnosis is made there is a requirement to get you on the right clinical pathway. The issue there is, when do you access the specialist opinion?
To come back to your point, there is a requirement for neurologists within the acute sector, but I very much support your point. A lot of what neurologists do within long-term conditions should be done in collaboration, in partnership, with our primary care colleagues: GPs and clinicians.
Q91 Chair: Do you accept the NAO statement that only two-thirds of people with Parkinson’s are seen by a specialist within six weeks? Do you accept that? Normally there is an acceptance of the facts. I am asking David or Una-one of you. It is unusual here to get something where you dispute value for money; I accept that. But are you accepting the fact that one in three people with Parkinson’s do not see a specialist within six weeks?
Sir David Nicholson: I have no reason to believe it is not true.
Chair: Thank you.
Q92 Fiona Mactaggart: There is a double negative again; he is an expert. Sorry, that was a cheap joke. Forgive me.
Dr Clough: The RTT was achieved for neurological conditions for more than 90% of patients.
Chair: Say that again.
Dr Clough: The 18-week referral-to-treatment target was part of the roll-out of the NSF.
Q93 Chair: Yes, we know that because there was an 18-week referral target-I think that was the evidence that we got before-all the energy went into that. It does not mean that people with Parkinson’s saw a neurologist.
Dr Clough: Well, should people with Parkinson’s always see a neurologist? That begs the question. They should see somebody who has the right skills to diagnose them and to ensure that they receive the right treatment. When we listened to patients within the consultation for the NSF, that is what we heard from them. That could be different types of people. There is no reason why geriatricians, for instance, who have skills with Parkinson’s disease, should not diagnose Parkinson’s disease. Increasingly, of course, our nurse specialists are getting such skills. It is always about whether the person has the right competencies to assess somebody with that particular presentation. I don’t think we should get into professional rivalries on this one.
Q94 Fiona Mactaggart: Dr Clough, you were implying that I was wrong in the allegations that I made earlier. I was quoting a report of D. E. Bateman, who is the chair of the Royal College of Physicians working party on local adult neurology services for the next decade, in which he says that the general physician with neurology expertise has disappeared. He states that admissions to acute medical unit are normally done by a general person, in the way that you described, followed by triage to the relevant specialist, such as cardiology or respiratory. He says that specialist beds and care is routine for all specialties except neurology, and he says that 10% to 20% of acute admissions are neurological. It is the third most common cause of acute admissions, and yet specialist beds and care is not routine in neurology. Does that not seem like something that you should do something about?
Dr Clough: Yes, but the answer to that may be a bit more complicated. People present acutely with problems that are not diagnosed, so you need to get on the right patient pathway. Who is the right person to receive that patient in hospital? In America, they have someone called the hospitalist, who has those generic skills who can actually say, "This looks like a neurological problem; let’s get them down the neurological pathway." I think my general physician colleagues and geriatric colleagues would be deeply aggrieved by Dr Bateman’s statement, because they do feel that they are trained to receive acutely ill patients and do have the skills to understand whether they are neurological or not.
Q95 Chair: I will just say for the record that the specialists behind you are shaking their heads. You have been very selective in whom you have put before us today.
Dr Clough: Well, there are always different views of the world.
Chair: That is why we are very pleased that we saw some specialists before you came.
David Moon: Is the point not the emphasis on where the care is taking place? If the care is taking place in a specialist hospital or a tertiary centre, it is likely that the patient, if they have a neurological condition, they will end up under the care of a neurologist at some point. If it is in a district general hospital, yes, I take the point that they will probably get admitted under either a general physician-an acute physician or a geriatrician-but then, if they have a neurological condition, it is unlikely that they will be seen in a DGH by a neurologist. Is that not the issue here?
Dr Clough: If I can unpick that, it is not entirely the case that if you go to a tertiary centre, you will be admitted into a neurology bed. Some tertiary centres such as Plymouth and Hull take, from the front door, acute neurological patients, but most do not because the tertiary centre has an issue of equity for all the patients in its domain: it worries about the competition between people coming through the front door-local patients-with patients who are at a distance, who do not have the same call on their services. There is a variable picture there.
I think you are absolutely right. The issue is about what the target should be to see a neurologist within a DGH. All our DGHs have visiting neurologists, but the level of cover in DGHs is variable, so not all of them are able to meet a target of seeing a neurological patient within 24 hours. That is something that I would strongly support: every patient with an acute neurological problem who comes into a DGH, diagnosed appropriately and assessed appropriately by the acute physician, should be able to see a neurologist within 24 hours.
Q96 Amyas Morse: And the fact they are not all seen means that the provision, taken overall, is not as high as it should be? That is what you are saying, I think.
Dr Clough: If you look at the picture of where the neurologists are, London does pretty well and in parts of the country there are fewer neurologists. One of the key points of Dr Pollock’s report was that there should be more equitable provision of neurologists throughout the UK.
Q97 Jackie Doyle-Price: One objective of the framework was to increase the number of people with their own personal care plans, but this Report has found that only 22% have those plans. Why do you think that is? Why is that figure not higher?
Sir David Nicholson: This is significantly different from the information that we have. I cannot explain why there is that discrepancy.
Q98 Jackie Doyle-Price: What is your figure?
Sir David Nicholson: More than 80% of people with long-term conditions have care plans.
Q99 Chair: That is an amazing disparity.
Sir David Nicholson: We survey literally millions of patients to get to that figure.
Chair: This may be unorthodox, but can we get the specialists at the back?
Q100 Amyas Morse: The 22% is your own figure, not ours. We did not go and do some calculations. We were supplied this figure by the Department of Health.
David Moon: It is one of the Department’s studies.
Sir David Nicholson: It is a particular study. Some people-
Amyas Morse: We don’t make it up.
Q101 Fiona Mactaggart: Why did you give the wrong study to the NAO?
Sir David Nicholson: It may be that within that 80%-odd almost nobody with a long-term neurological disorder has not got a care plan, but the general point on care plans is that we have been very successful. We have clearly not been as successful as we could have been with this group of patients-
Q102 Chair: It has just been pointed out to me that it came from the Oxford University study.
Sir David Nicholson: Yes, that was the research that they did at the time. I would argue that our survey is significantly bigger than that one. Having said all that, though, whatever it is, it is not enough. One thing that comes out of all this clearly to me-to all of us, I guess-is that co-ordination of care is at the heart of all this. There is no doubt that, if you look around at the moment, our biggest difficulties in the NHS at the moment are where we have to co-ordinate significant different people involved in the care of individuals, and that is getting greater. If you look at patients’ experience of our care, where they have one specialty, one service and one episode of care, it is much higher than people we have heard of who can, literally, have up to 15 or 16 different agencies with perhaps 20 individuals involved in their care. That is a real challenge for a system like ours to deal with, and I have to say we have not solved that problem.
What we have done is look at how you integrate care and what are the most likely ingredients that you need to make that care happen. The first ingredient-I almost do not want to say this-is information about individual patients. If you do not get that right-for example, utilisation of the NHS number across health and social care-that will have a massive impact on our ability to integrate care for patients, because at the moment we cannot track where patients are being treated and what services they have. First, you get that register. The second thing is that you then stratify-they call it risk stratification-which means you identify those patients who require lots of care and those who require less, and you organise your services to deliver individual packages in that way, as opposed to a blanket approach. Then there is a series of other things that you need to do.
The pilots have just reported on this. As you know, the NHS Future Forum has been looking at integration of care. I think we have some really good ways forward now, which will help and improve that position, because at its heart it is a big problem for patients and for us.
Q103 Jackie Doyle-Price: Do all the PCTs prioritise this enough, or is application inconsistent? A conclusion from what you said is that one difficulty with your data and ours might reflect the data that you are receiving from the PCTs, which is not consistent. That comes back to the question: why have we not got clear objectives and clear data that they need to report?
Sir David Nicholson: Clearly, not all the commissioning organisations in the country are treating this in the same way. That is obvious from the variation that we have, and there is too much variation. Indeed, one downside of the National Service Framework and the way it has been set up is that you are really dependent locally on the enthusiasm and leadership of local people to make your service happen. That is great for those places where you have that leadership, but a real problem where you do not have it. Building that leadership capability, whether through a national clinical tsar like Mike Richards or through some other mechanism, is vital to making this happen.
Q104 Jackie Doyle-Price: One of my biggest concerns about the output of this policy is that, having set the strategy and raised expectations, those who represent vulnerable people wanted to take advantage of those expectations. The fact that you have such poor and inconsistent application by PCTs has really left them in a very cynical position. We have a challenge and the new well-being boards give us an opportunity to address that, but I think we are looking for quite a strong steer from the NHS that, "We are going to fix this and we have learned from what has gone wrong." What sort of guidance are you going to give to make sure that all the local health organisations grasp the nettle of this challenge?
Sir David Nicholson: In a sense, it is one of the benefits of having a National Audit Office Report of this nature, because this Report will be read throughout the NHS. We are identifying the three quality standards that NICE will produce and we will publish, and the measurement of that will be available to all health and well-being boards and organisations, so you will absolutely be able to tell where you are on that. We will set commissioning guidance that will support the implementation of these quality standards in an organised way. We are not just going to produce quality standards and let people decide whether they want to do it themselves. We are going to say: these are the standards that we expect and we want to see your plans to deliver them, which I think is quite a different way from the National Service Framework as it was originally established.
Una O'Brien: If I may just add to that in relation to the Department of Health, during this year we will consult on the first mandate between the Department of Health and the Commissioning Board. That mandate will contain priorities or objectives that the Government wish the Commissioning Board to meet. We want to have a wide-open consultation. We want to hear from patients and the public, and we will ourselves be looking at the evidence of where there are opportunities for improvement and where there is underperformance. I am sure that Ministers will want to have a look at all of that in weighing where they want to pitch the mandate. I think that that is going to be a significant first step into the implementation of the new system-setting the mandate for 2013-14, next year-so using the outcomes framework is centre stage.
Going back to Mr Smith’s question to me earlier, the real question is, "What is the level of ambition that the Government wish to set for any one of those indicators?" They are not necessarily targets, but there is an ambition to be set for the Commissioning Board to deliver. We are going to hand over this amount of money. What are we going to get in return for it? That is going to be the big question at the centre of the mandate. At national level, that will be our focus this year and we will certainly be taking account of this and other reports that we have had from your Committee. We will be taking account of feedback that we get back ourselves from patient groups from all different arenas of the health and care sector and bringing that evidence together to try to calibrate where we should set the priorities in the mandate.
Q105 Nick Smith: Just a little thing. Mr Nicholson, when talking about the importance of building local capacity, you remarked that it might be the responsibility of some sort of national tsar or lead clinician, and I just did not get that. I think that local capacity is best done by local advocacy groups, or people from a particular area.
Sir David Nicholson: Sorry, what I meant by that is that if you take cancer, which I think people regard as the gold standard in some ways, one of the things that Mike Richards did very effectively is that he got the local clinicians, the oncologists, the surgeons, the pathologists and the radiologists together and he worked with them. We gave them education, training, support and help so that they could become local leaders. That is what I meant.
Nick Smith: Okay, I understand that.
Q106 Austin Mitchell: I am glad to hear that. I was disappointed to hear you say earlier that the politicians were only really interested in statistics when they can prove lives have been saved or whatever, and this is not that sort of area, so you got the impression that politicians were not interested. Well, the politicians were interested enough to give a big dollop of money for the treatment of these frightening, appalling conditions. The way that money was spent, whether it gave value for money and whether it encouraged best practice was your responsibility at the Department. The failure is there. It is not a failure of the politicians. It is a failure of the Department. That augurs badly for the age of localism to come, unless you pull your socks up.
Sir David Nicholson: I will obviously pull my socks up. I obviously need to be better. We all need to be. I definitely was not blaming or criticising politicians for any of that. I was just observing on the Government’s policy at the time. It was not just the Government; everybody thought that the big killers, cancer and coronary heart disease, were the things, and partly because the way of the time was about national targets, money attached to them and all of that sort of thing. These groups of patients and the conditions that they have do not fit easily into that situation. There were no big national targets that you could apply in that time and in that way. I certainly was not criticising, because you are absolutely right. The NHS has grown by a third over the last 10 years.
Q107 Chair: Thank you very much indeed. I hope the National Audit Office can return to this, after 2013-14 but before the end of this Parliament, so that we can then measure, if that is possible, the impact of the lessons learned from this. Thank you very much indeed for your evidence.
 Note by Witness: NICE have been commissioned to develop Quality Standards covering epilepsy services for both adults and children and headache/migrane in young pe ople and adults. Quality Standar ds for motor neurone disease, Parkinson’s disease and multiple sclerosis were part of the recent engagement exercise run by the National Quality Board and NICE on those topics that will initially make up the proposed library of Quality Standrads.