Epilepsy Services

John Pugh Excerpts

Tuesday 12th October 2010 Westminster Hall

[Dr John Pugh (Southport) (LD)]

I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on speaking in such a personal and informed way. With your indulgence, Mr Streeter, I welcome the new shadow Health Secretary, the right hon. Member for Wentworth and Dearne (John Healey), to our midst. I congratulate him on his party’s endorsement of him. Achieving such a position in the rankings can only be a reward for the competence and ability shown over a sustained period.

Flattery aside, epilepsy is one of the oldest diseases known to man. It has affected many celebrated and distinguished people—not only the hon. Member for Blackpool North and Cleveleys but Julius Caesar and Dostoevsky, whose book “The Idiot” contains the best literary encapsulation of what it is like subjectively to experience the condition. However, for many people, it is a profoundly socially debilitating experience. My first encounter with it as a fact of life was when I was a child in primary school in Maghull. On my way to school, I walked past what was in those days called an epileptic home, where it was not uncommon to see the rather distressing sight of a man—he seemed quite elderly, but was presumably younger than I am now—lying on the floor while his workmates gathered around him, spoon in hand to stop him swallowing his tongue.

The presumption in those days was that epilepsy debarred people from a range of activities. Those men were obviously considered suitable only for farm labour and lived, as I said, in what was then called an epileptic home. It is now a nice flat development; care has moved on. Things have improved enormously, largely due to the intervention of drugs, better neurological understanding and the involvement of patients and patients’ groups—I think the hon. Member for Blackpool North and Cleveleys alluded to the expert patient programme. People have become better at controlling the condition and, indeed, at preventing seizures within the condition. These days, many people who have epilepsy do not actually have seizures.

However, when we consider the provision available for the condition, it is manifest that we need centres of special excellence, such as the Chalfont Centre and the Walton Centre for Neurology and Neurosurgery NHS. There is a high rate of misdiagnosis and epilepsy is not a subject on which even an acute hospital always has the relevant or best expertise. It is also clear that the prevalence of the condition means that specialist support has to be available locally in the acute environment and in the community. Nurses need to be able to give the patient the support that they need. That is particularly the case for children who, of course, are not expert in their condition. Such general provision is needed to improve diagnosis and treatment, to control symptoms and to provide advice. As well as doctors and specialists, nurses are clearly crucial, and that was, in fact, the theme of the hon. Gentleman’s comments.

My research on the subject so far has clearly shown that treatment is a lottery for patients across the country and that access to centres of excellence varies. Appointment times, local commissioning and support differ from primary care trust to primary care trust. Such is the variation that the Minister of Health in the previous Government suggested that strategic health authorities should be asked to review their provision because the statistics were showing that 64% of PCTs had no specialist nurses, and there was a 20% to 30% misdiagnosis element in treatment. It was also said that there were 400 avoidable deaths. I am not sure how that figure was established, but appreciable costs are obviously involved in suing—I have seen £138 million and £183 million mentioned. There are different figures given on that, but clearly the amount concerned is substantial and we need to take the issue seriously, particularly in a time of austerity when resources are perforce stretched.

I hope—the hon. Gentleman certainly shares this hope—that, as we gravitate towards GP-led commissioning, some of those ills will abate and the situation will improve. Presumably, specialist neurological services will be a matter not for local PCT commissioning, but the national commissioning body. However, it is not entirely clear how good or able such a body will be—whether it will be in a strong or weak position—to deal with the matter.

In terms of tracking parliamentary answers, many of which have been provided by the Minister or his officers, no information is collected centrally on specialist appointments or on readmission rates. There is also no information available on the destiny of specialist nurses—how much time they spend performing their specialist function and to what extent they get drafted into other work. There may be enough evidence for a national commissioning body to do a good job and produce the right kind of service across the country to the satisfaction of the hon. Gentleman and all other epilepsy sufferers, but it is not currently apparent that the data are there to allow that to be done.

In addition, it cannot be assumed that all GP commissioners would be able and willing to commission well. I was interested in what the hon. Gentleman said about his journey of moving from one doctor to another, and the expertise being available in one practice as opposed to another. There are quite good reasons why GP commissioners and GPs themselves might not be able to field every episode of epilepsy to everybody’s satisfaction—for example, they might have limited clinical experience or be new to the profession. On the basis of the statistics I have seen—I have put them to some use and come up with a figure—I calculate that most GPs probably have on average around 10 patients who suffer from an epileptic-like condition. GPs might not see many people with such a condition very often at all.

So how do we ensure that GP commissioning is, as we all hope, better and not worse than PCT commissioning? I think we all recognise—indeed, the previous Government recognised—that PCT commissioning was by no means perfect. Monitoring GP performance is particularly difficult because epilepsy sufferers are very much a minority. It is not clear who will monitor how well GPs are dealing with the matter. After all, GP performance monitoring is currently done by PCTs and, clearly, GP monitoring that is done by GPs might not be as good as GP monitoring done by others. The legislation does not make it entirely clear how big GP commissioning bodies will be, but presumably they will be on a smaller scale and have fewer resources than the PCTs that they will replace. That is an issue.

When the new regime appears, how will we get improved commissioning, so that there is not a repetition of the problem of a minority condition not being treated particularly well? The Department of Health has a mantra that goes something like this: commissioning is a matter for local decision making and the Department will not tell local commissioners how to do it. However, it will judge them against a quality framework and assess how well they are doing it. I think that the expression is that GP commissioners will be “held to account” on how well they deal with epilepsy as a condition.

That is fine by me. I am very comfortable with that being done—it certainly should be done and I think that the hon. Gentleman will be very comfortable if that is done—but what does the expression “holding to account” mean? The phrase is relatively undefined and I can think of about three different meanings I could give it. The Minister can perhaps tell me which definition is right. If a GP commissioning body fails to perform well in dealing with this chronic complaint, does “holding to account” mean that they will simply be named and shamed? Does such an expression mean GP commissioning bodies will be financially penalised, which is another way of being held to account—if someone does not do the job they are supposed to, they will lose resources as a result; or does the phrase mean—this is the third definition—that GP commissioning bodies will be overruled? The actual task of holding to account is important and it is vital we are precise about what we mean by that. Unless we get the right profile locally, talking a good game here will not make much difference.

In holding GP commissioning bodies to account, we must ask ourselves not only how the issue is examined, who examines it and what they then do, but from where the information comes for such an examination. In other words, five, six or seven years down the line, if we have to examine how one local commissioning body performs compared with another, will the only way to do that be by asking that commissioning body to mark its own papers and provide data of its own choosing? Clearly, that would not be adequate or satisfactory. Those are fair questions.

I think that the Minister and all hon. Members here want progress in dealing with this chronic condition. We do not simply want frameworks, guidance and detail here and there of what should be in place—the hon. Member for Blackpool North and Cleveleys used the phrase “decorative features”—without there being a hard-edged attempt to ensure that what we believe should be in place actually is in place. I conclude by simply pressing the Minister to say what will happen when a GP commissioning body performs less than adequately. Who will do what, when and with which data? That is not a trivial question; it is important to all epilepsy sufferers.

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[Owen Smith (Pontypridd) (Lab)]

I thank the hon. Member for Blackpool North and Cleveleys (Paul Maynard) for securing this debate, and for speaking so eloquently and passionately. I do not hope to speak with his expertise, but I do have some expertise, inasmuch as I have a close family member—a brother—who has suffered with epilepsy over the past 15 years. I have some insight into the nature of the difficulties that he has encountered, the problems in the current NHS system, and the issues that emerge in dealing with this chronic but particular condition in that system.

My brother is one of the 500,000 people in this country who have epilepsy. They are a minority, but a significant one—that is a lot of people. He is also one of the 50% of the 500,000 who are not seizure free: he has had a seizure every month, if not every week, for all of the past 15 years. That has had a dramatic impact on his life in terms of what work he is able to do, the energy he has, and the fear that he lives with, which the hon. Gentleman described so eloquently and which all people who have epilepsy have to contend with on a daily basis, of sudden unexplained death as a result of the condition.

That is my interest. It has given me an insight into issues that have already been raised today about the postcode provision, to use the vernacular, that exists across the NHS. We have a fragmented NHS, particularly in respect of epilepsy. That is the case for many other conditions, but it is particularly true for epilepsy. The phrase “Cinderella condition” is rather overused in the press these days, but epilepsy is one of those conditions. We can genuinely say that it does not have the high profile that it ought to have and therefore does not receive the concentration that it should.

There is clearly fragmented, unequal distribution of expertise in the NHS in terms of general practitioners, who, as the first point of call for anyone suffering with epilepsy, are critical, and nurse specialists. I believe that that is widely recognised. Like the previous Government, the current Government recognise that specialist nursing for epilepsy is under-resourced in this country and, equally, that it is an extremely important means of redressing the problem of insufficient provision of expert GPs.

It is clear that there are few centres of excellence for epilepsy in this country, and, therefore, that people such as my brother, who lives in Wales, have to travel long distances to hospitals or other centres of excellence for prolonged examinations to monitor brain patterns. He, too, suffers from nocturnal epilepsy, and therefore needs to be studied in clinical conditions in hospital to try to determine the nature of his condition and what resources might be brought to bear to alleviate it.

I, too, have some fears about the extent to which the creation of the new GP consortiums will exacerbate the problem of fragmentation and inequality of provision across the country. I can accept that, in areas where there are GPs with a special interest or particularly strong centres of excellence, there may be a beneficial effect in massing GPs together and spreading their expertise through a wider network. Equally, I can see significant potential for unintended dangers if we do not have GPs in those consortiums and we have a diminution of control over, and certainly insight into, their activities. It is unclear what the sources of commissioning will be, and who exactly will be commissioning specialist services. That has yet to be clarified, and I look forward to the Minister’s giving us some greater insight into that.

Another thing that I worry about in respect of consortiums is data. We have poor data on epilepsy: how many people suffer, the nature of their condition, how often they attend hospital, how often they are treated for acute episodes. Perhaps if their condition had been managed more effectively, it would not have reached that point. I have tabled numerous parliamentary questions about that recently, and all the answers confirm that we do not gather enough data.

There will be a further danger that we will not gather data if we fragment the NHS to the extent that is proposed with the creation of the consortiums. I hope that the Minister will give us some reassurance that information gathering will be a priority, whatever the structural make-up of the NHS, and that we will continue to see that critical piece of the jigsaw applied in respect of epilepsy care. In recent years, we have seen data gathering become an important tool for tackling other chronic conditions, notably cancer.

I worked in bioscience before coming to this House, and therefore have some insight into the science around epilepsy and the economics around the production of medicines. Prescribing of epilepsy medicines seems to involve a form of Russian roulette because our understanding of this neurological condition is deeply imperfect. For example, my brother has been through 11 or 12 medicines and combinations of medicines. Doctors still employ what is pretty much a hit and hope strategy. Perhaps I am being slightly unfair, but I believe that many epilepsy experts recognise that they do not really know which medicine will work, and therefore they try various drugs until they find the one that works for their patient. In my brother’s case, and in the case of 50% of sufferers, they often do not find the one that works, and we get into the more complicated issues around whether surgery is required.

Generic substitution is clearly an issue. We all understand that we need to make savings, and the importance of substituting generic medicines for the original brands when they are available.

[Dr Pugh]

The hon. Gentleman made a good point about data, which is worth repeating. However, there must be data on every episode dealt with through acute hospital care. His Government introduced the tariff system. Therefore, in some shape or form, the data are there—they just do not appear to be available for clinical purposes.

[Owen Smith]

The hon. Gentleman is absolutely right, and I have recently had answers from the Government about that. It is not simply a question of gathering the data. The NHS is a wonderful sponge, soaking up data. The critical thing is wringing it out and employing data to improve services. Epilepsy is a condition that has not been concentrated on, and therefore there is no emphasis on garnering data.

We must be careful about generic substitution of epilepsy drugs. I know that many sufferers agree with that. Another point is that genericisation of a market in medicines leads to changes in the economic incentives for research and development companies to produce them. There clearly are not incentives for companies to produce new epilepsy drugs. That is inevitable because of the large number of epilepsy medicines, many of which are effective, and many of which have been genericised.

Part of the answer in fixing markets that are not working has to be Government intervention to try to improve incentives. The previous Government were making effective inroads through the innovation fund and the innovation pass that they were negotiating with the pharmaceutical and biotechnology industries, which would have encouraged and incentivised further R and D into more recondite diseases and the production of medicines where there is not an immediate economic incentive.

I was therefore discouraged to hear that the innovation pass is being abandoned by the Government—it will not be taken forward. I would like to hear some reassurance from the Minister that he is aware of the issue and interested in looking at how he can work with the pharmaceutical industry to incentivise further R and D into those areas where this country does not perform well. Epilepsy is one of them. We have a higher incidence of unnecessary death from epilepsy, and, bluntly, we do not prescribe terribly well for it. It is an area where we could produce more and take advantage of the great skills in the pharmaceutical industry, and where the Government could have a positive impact.

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[Paul Burstow]

The hon. Lady makes a very important point. I was talking about using the data to improve standards, but we also need to ensure that, through NHS information prescriptions, we provide better and more timely information to people. Further work is also necessary in that area.

A message that comes through strongly is that commissioning is key to better epilepsy care. We believe that placing decision making much closer to the patient through general practice consortiums will unlock new opportunities and lead to more sensitive and responsive decision making about care and treatment pathways. Some patient groups and some hon. Members in this debate have expressed concern about the experience and knowledge of GP commissioners in designing epilepsy services. Let me say a little more about that.

The NHS commissioning board will have a vital role to play in supporting consortiums. It will set commissioning guidelines based on clinically approved standards developed by the National Institute for Health and Clinical Excellence. In addition, the long-term conditions delivery support team will work closely with new directors of commissioning, their commissioning boards and GP consortiums to build skills and awareness. For example, the team has already developed a new commissioning pack, bringing together information that commissioners will need to design good epilepsy services.

My hon. Friend the Member for Southport has asked me, within about four days of the close of consultation on the White Paper, to describe in full and complete detail every aspect of the new accountability regime for the new system. I will not do that in the debate today, because that would not do justice to the 5,000 respondents to the consultation. The Department is in the process of properly considering the responses to the consultation and we shall give a considered and proper response. What we have done so far is set out clearly the direction of travel and reform. I think that my hon. Friend has conflated two or three things in his test of accountability: professional accountability, accountability to the public and accountability to other organisations. We will make clear, when we set out the next steps to the reforms that we have proposed in the White Paper, precisely how each part of the accountability conundrum that he posed is properly addressed.

[Dr Pugh]

I thank the Minister for that response. He has spoken about frameworks and about commissioning standards. I hope that he will go on to speak about what happens when the frameworks are not in application and when the commissioning standards are not observed, for whatever reason. The only thing that I have heard him say so far is, “We’re going to have a competitive local environment. People can vote with their feet.” That is an awfully London-centric view, because in many areas of the country, that is not a realistic option.

[Paul Burstow]

I think that my hon. Friend perhaps needs to reflect a little further on the White Paper proposals and what I have said in the debate, because what we are actually talking about is not competition in terms of people always choosing to go somewhere else, but in terms of the ability to see what somewhere else looks like and make a comparison and to ask commissioners locally why they are not commissioning to the same standard. It is as much about that as about being able to move around the country, and certainly that is what we are determined to deliver.