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Paul Maynard (Blackpool North and Cleveleys) (Con)
It is a pleasure to serve under your chairmanship today, Mr Streeter. It is also a pleasure to see so many Members in Westminster Hall, which shows how important the topic is to so many people.
I am very pleased to have secured this debate at what is a crucial time for people with epilepsy—crucial because of the uncertainty about how the Government intend to deal with the condition in the future. We are going through a period of structural reform in the NHS, which I strongly believe will lead to substantial benefits for many patients, but there may well be a temptation during this period of reform for the Department of Health to concentrate more on structural reform than on individual conditions such as epilepsy. I want to use this debate to try to explain to the Minister why he should focus on particular chronic conditions and not just on the bigger picture of structural reform. In particular, I want to explain why I think that epilepsy is quite different from many other chronic conditions.
I have epilepsy myself, as well as another chronic condition, cerebral palsy. The cerebral palsy is part of my life, day in and day out; it never goes away, it is always there and I know that it is there. Epilepsy is qualitatively different. I often liken it to a thief in the night, because it creeps up unexpectedly. I have nocturnal epilepsy, so epilepsy affects me when I fall asleep and the chemicals in my brain do whatever they do such that a fit occurs. In my case, fits are triggered by alcohol, so I now have to avoid alcohol continually everywhere I go.
What is important to stress, and what many people without epilepsy may not realise, is the fear that accompanies epilepsy. I do not fear my cerebral palsy, because it is predictable; I know that it is there and I know what is occurring as a result of it. With the epilepsy, however, when I wake up the morning after a fit, I do not know who I am, or even necessarily where I am. My short-term memory has gone and I cannot quite put together what I did the day before, including where I was. Even now, when I have a fit I am not really sure where I am in the country and I fear what has happened to me overnight. Have I soiled myself? Is there a mess on the floor? Will I have to call for help and have to deal with the embarrassment that that might cause? It is therefore very important to stress to those who do not have epilepsy the fear that accompanies a fit, or rather the fear that accompanies the aftermath of a fit. It is not the fit itself that is the unpleasant experience for those of us with epilepsy, because we do not experience it; we are not there during a fit. It is the aftermath—dealing with the consequences of a fit—that is often the problem.
For many people with nocturnal epilepsy, perhaps the biggest fear is something called SUDEP. Those without much familiarity of epilepsy may not be aware of SUDEP, but it stands for sudden unexpected death in epilepsy. Almost 1,000 people die from epilepsy every year, many of them in the younger age groups, and two thirds of those deaths are avoidable. As I say, SUDEP particularly affects young people, yet one survey by Epilepsy Action found that 33% of primary care trusts lack a transition plan for the transition of individuals from childhood to adult care. I think that such a plan is vital, because when an individual moves from childhood to adult care, that is their period of greatest vulnerability. Many of the tragic cases that I have received letters about—I know that many other Members here today have also received such letters—involve young people who one minute were living a happy, normal life, and then suddenly one night they went to sleep and did not wake up. To me, such cases are great tragedies. A focus on the provision of better-quality data on children’s epilepsy and transition care is needed, to see whether we can prevent such cases from occurring. If we could only match the median death rate for the 15 original EU member states, for example, we would prevent a quarter of the current deaths from SUDEP in Britain. If that number of deaths was caused by a single transport accident, we would have a public inquiry tomorrow. These days, calling for a public inquiry has become something of a cliché, but I am talking about a substantial number of deaths, and I believe that we can make progress in reducing it.
The issue is not only the human cost, but the financial cost. In particular, I want to focus on misdiagnosis. Epilepsy Action says that between 20% and 30% of cases of epilepsy are misdiagnosed, at a cost of £140 million to the NHS. I know from personal experience that misdiagnosis happens. When I first started having fits at night, when I moved down to London in my early 20s, I did not really know what was happening to me. I just thought that I was falling out of bed, but there was blood everywhere and I could not quite put two and two together. One evening, I threw myself out of bed sufficiently hard that I banged my head against my bedside table and had quite a deep cut between my eyebrow and one eye, missing taking my eye out by the narrowest of margins. My next door neighbour said, “I really think that you ought to go and get that seen to.” I did not want to get it seen to, because I could not really explain to the nurse what had happened. Nevertheless, I pootled down to the hospital, where the attitude of the nurse was to say, “You’ve been drinking, haven’t you?” To my mind, that is a classic example of misdiagnosis. A chance to diagnose me with epilepsy and to start me on a treatment plan was missed because there was a presumption that I had been drinking and that the cut I had suffered was caused by drunkenness.
Misdiagnosis affects the treatment of epilepsy at every stage of the process. Apparently, some 74,000 people who are diagnosed with epilepsy do not actually have it. Not only does that misdiagnosis have a cost in terms of the cost of the drugs that those people are put on, but it has a human cost in terms of the stigma that those people feel that they have to bear and the worry that they face in their daily lives. If they could only be diagnosed with what they actually have, rather than with what they do not have, that would improve their lives.
There are also 69,000 people who have the wrong type of epilepsy diagnosed. I have gone into quite some detail about the type of epileptic fits that I have. I gather that there are some 40 varieties of epileptic fit that can affect an individual and they all require slightly different treatments, so it is important that people are given the right diagnosis. That is why specialisms matter. Epilepsy is special and I want the Minister to regard it as a special type of chronic condition. That is not to say that other chronic conditions do not matter or are unimportant, but epilepsy is quite different from many other chronic conditions and it needs to be treated in a special way.
That special treatment means having special GPs to deal with epilepsy. I was fortunate that, when I was first diagnosed with epilepsy, I had a GP who was interested in the condition. When I moved house, my next GP was not quite so interested in epilepsy, so the nature and quality of my treatment and care changed. With the formation of local commissioning groups, I hope that we will have the opportunity for GPs to develop those specialisms and to build on those interests, not just in the treatment of epilepsy but in the treatment of the other special conditions that people regularly go to their GP about. I think that local commissioning groups offer an opportunity to advance that agenda and I urge the Minister to explain to us how he thinks the groups can help GPs to develop those specialisms.
It is worth highlighting a report by the all-party group on epilepsy back in 2007—three years ago now—which contained a fantastic quote from Dr Hannah Cock, a senior lecturer at St George’s hospital, who said
“Unless patients with long-term epilepsy at general practice level are in crisis, they do not get referred.”
That is a very important point. People should not have to wait for a crisis to occur before they get the treatment that they most need. I know that President Obama’s recently retired chief of staff is known for saying, “Never let a good crisis go to waste,” but when it comes to epilepsy care, we do not want to get to that crisis point. We want to have consistency of care and that consistency of care is itself very important.
In particular, I want to raise the issue of generic substitution, which again might sound rather arcane to those who are not familiar with it. Like many other people, I take a regular dose of medicines and tablets. I go down to my pharmacy every six or eight weeks to pick up my new set of prescriptions. I have no problem with the idea of substituting generic medicines—it is important that we get value for money and effective medicine. What I am concerned about and what I ask the Minister for reassurance on is consistency of supply. Although the name on the packet might be the same, if the drug comes from a different manufacturer that uses a slightly different compound—if it is altered in ever so tiny a way—it can have a massive impact on how my brain reacts when various things occur in it that might lead to fits. Consistency of supply, not generic substitution itself, is my concern. I know that the Department has engaged in a consultation on the matter, but for the sake of the many people like me who are worried about it, I ask for some reassurance.
The other issue involving consistency on which the Minister can offer some comfort is specialist nurses. They are a wonderful idea. Epilepsy Action has been campaigning to promote their virtues, referring to them as “sapphires”, and they have an important role to play. We have about 250 at the moment, but the best estimate of how many we need is 1,100. There is clearly a gap, and those who are retiring or leaving are not being replaced, so the shortage will continue to worsen. The previous Government recognised the importance of sapphire nurses and was going to study their effectiveness. Will the Minister reassure me that the current Government will proceed with that study and recognise the importance of such nurses? Specialist nurses are a cost-effective means of providing consistent low-cost care that monitors a patient’s condition over time, ensuring that any blips on the radar are picked up early and preventing the need for costlier intervention further down the line.
That is the crucial point: better care and treatment are more cost-effective. We are all, I hope, looking for ways to save money, and that is one way to do so. We do not want inadequate care at the primary care stage to lead to more expensive tertiary care later. We do not want crises to occur. Cheaper care occurs in a primary setting and helps individuals to manage their condition, putting the patient in charge. However, to use the word “special” again, we need more specialism at the tertiary level as well. Neurological consultants are thin on the ground, but neurological consultants with an interest in epilepsy are even scarcer. They offer one way to help to prevent and correct misdiagnoses and to get it right the first time, but I gather from another Epilepsy Action survey that 90% of primary care trusts are not meeting the recommended two-week deadline for seeing a consultant.
I say that with a degree of caution, because I am no fan of two-week deadlines. They can be artificial, lack clinical sophistication and rob clinicians of their own clinical judgment. I have never been a fan of the two-week deadline. However, in my view, it has slightly more than a decorative role, if only because a lot of people present to their GP when the sort of crisis that I mentioned has occurred. Some degree of urgency in referral is needed, particularly because I hear many stories of cases where patients have died after referral but before having seen a consultant. That is an avoidable tragedy. We do not need artificial deadlines or targets, but there needs to be some way to ensure that urgent cases are referred promptly and reasonable confidence that they will see a consultant within a reasonable period.
I also ask for a bit of special treatment on the national level. I would be interested to hear whether the Minister might consider creating the post of national clinical director for epilepsy, which has been a long-term demand of many organisations in the Joint Epilepsy Council. One can commission successfully at regional level—it has been done in many parts of the country for many chronic conditions—but a degree of national oversight is needed to ensure that standards are set and adhered to. I realise that the National Institute for Health and Clinical Excellence has set clinical guidelines, but I have concerns.
In 2005, I was fortunate enough to be the parliamentary candidate for Twickenham, not far from the Minister’s constituency. I wrote a letter to the local paper during national epilepsy week because I wanted to highlight the issues, and someone wrote in the next week to say that clearly I was possessed by evil spirits. I had thought that Twickenham and south-west London were a particularly liberal, enlightened part of the world. That is what I was always told; they were so sophisticated that they had discovered liberal democracy a few years earlier than the rest of us. Blaming evil spirits was perhaps a bit unfair to me, but for many patients, NICE clinical guidelines are a bit like spirits. They have no real substance or tangible meaning, because they are not mandatory.
I know that there is always a big discussion about whether clinical guidelines should be mandatory if we do not want to take clinical power away from consultants, but clinicians are frustrated that they cannot implement the guidelines, and patients are equally disappointed that the guidelines do not mean anything in reality. There is a perhaps more philosophical question to be dealt with. If we are to have clinical guidelines for any condition, how can we deal with the fact that clinicians need to be reasonably confident that they are supposed to implement them and patients need to be confident that they will mean something? There is no point having clinical guidelines as decorative features. They are not Christmas trees; they are meant to help clinicians give better treatment.
The last Government met the Joint Epilepsy Council. I pay immense tribute to the then Opposition spokesman, Earl Howe. I know how much he has done on epilepsy and I have worked with him for many years. He is a good man, and I more than anyone am delighted to see him a Minister at last. He told the conference of NHS commissioners to go away and make a difference. How, specifically, does the present Minister think that NHS commissioners are making a difference? In particular, I make a plea to him to meet with me and representatives of the epilepsy charities—the Joint Epilepsy Council, Epilepsy Bereaved, Epilepsy Action—and senior clinicians to discuss some of the sector’s fundamental concerns. As I said, better treatment and better care will lead to bigger cost savings for the Department, but more importantly, they will improve quality of life of the 400,000 people in this country who have epilepsy.
I was surprised to read that the primary care trust for my Blackpool constituency has the highest incidence of epilepsy in the country. I had not realised that. We are talking not about a small group but of a large group of people who must deal with an immense stigma in their lives, as I know some of my hon. Friends will describe. We must deal with it day in, day out. Epilepsy is unlike any other chronic condition. I thank the Minister for listening and my colleagues for attending. Can we please hear some good, positive news about how the Minister intends to take the agenda forward?
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.
Nic Dakin (Scunthorpe) (Lab)
I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing the debate and on speaking so eloquently, which focused our minds from the start. I am pleased to have the opportunity to say a few words on the impact of NHS treatment on the education of children with epilepsy. The hon. Gentleman mentioned misdiagnosis and the impact it can have on children and on adults, and he mentioned the impact of transition, with 33% of transition plans not being what they should be. That has a negative impact on not only children’s health, but, crucially, their education. I am pleased that some students have attended the debate to listen to what we have to say.
There is some very good practice in parts of the NHS, but it is not consistent across the whole health service, and schools and colleges could do much more to support children with epilepsy. I am pleased that the Minister of State, Department for Education, the hon. Member for Brent Central (Sarah Teather), is planning to meet the Joint Epilepsy Council later this month and I hope that she will pick up the matter with the same interest as her predecessor, my hon. Friend the Member for Kingston upon Hull North (Diana R. Johnson).
The education system must learn from best practice so that it can ensure that the education of young people with epilepsy does not suffer as a result of the wrong support in schools. Children experience particular problems in mainstream schools because of the NHS’s occasional failure to get their treatment right. I urge the Minister to work with his colleagues in the Department for Education to ensure that minds are brought together on that to get the best deal for children.
As the hon. Members for Blackpool North and Cleveleys and for Southport (Dr Pugh) noted, the move to GP commissioning offers opportunities, but it also offers risks. Whatever changes are made, it is crucial that young people with epilepsy do not suffer further because of increased instances of misdiagnosis and a lack of appropriate support. I hope that the Minister, with his colleagues in the Department for Education, will bring sufficient analysis to bear to ensure that that can be better dealt with in the education system.
We should look at the commitment that is in place in Wales to have a school nurse in every school and consider whether we should have something similar in England to ensure consistency of support for young people with epilepsy and other conditions so that their education is not negatively affected. There is a double disbenefit with epilepsy: there are the health issues, which were explained so excellently earlier; and there are the knock-on effects on children’s education. That is what concerns me and why I have spoken in the debate.
Laura Sandys (South Thanet) (Con)
I thank my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for securing the debate, as it is important that the matter is brought to the fore. I am lucky and privileged to be the chairman of the all-party group on epilepsy, and I am pleased that we are joined today by many young epileptic people who are taking their education forward and have a bright future ahead of them. We must ensure that we give them the same future in employment that we give other young people, and that future is about controlling a chronic condition.
Like my hon. Friend, I am epileptic, though I am lucky to have had very few seizures—I have had five in my life and no incident in the past seven years. There is a wide range of conditions—40, as my hon. Friend mentioned. Some people, like me, sometimes forget that they are epileptic, while others have seizures regularly, sometimes daily. The issue we all share is stigma. As soon as one mentions the word “epilepsy”, all sorts of extraordinary ideas come into people’s minds, and there can be an assumption that we might need constant attention.
Children with epilepsy have a particularly difficult time in school, because even if they do not have any seizures they can be wrapped in cotton wool and stopped from participating in outdoor sports. A child with epilepsy of course needs attention, and my hon. Friend is right that nurses and teachers need to understand that seizures might occur, but we must start to relax about this. We must focus on epilepsy from a medical point of view, but we must not stop young people participating and being part of a life when, with proper diagnosis and the right medication, they can make an important contribution in school and in employment.
I do not know whether other hon. Members know this, but my hon. Friend and I, as epileptics, are not allowed to walk up the stairs to the top of Big Ben. There are many things that we cannot do, such as recreational diving; epileptics cannot go diving unless they have been seizure free for five years and have not been taking medication for that time. I would have thought that it was probably quite useful to take medication, and I have done quite a bit of scuba diving without knowing about those regulations. We are creating barriers because we do not understand the variations in epilepsy. There is extreme epilepsy, mild epilepsy and seizure-free epilepsy, and we have an opportunity to ensure that more people are seizure free and making a contribution to society. I would like the Minister to join us, with the Joint Epilepsy Council, to ensure that we start to make the authorities, teachers and the medical profession understand more about the variations and the opportunities available to people with epilepsy who have been properly diagnosed and are properly medicated.
My chairmanship of the all-party group on epilepsy is concerned with stigma and with those who have severe epilepsy, but also with liberation for those who have controlled epilepsy. When I became chairman, I was contacted immediately by a local GP, who happens to be one of the best in the country specialising in epilepsy. Over the past five years, with seven GPs specialising in epilepsy, we have reduced related A and E admissions in South Thanet by 60%. That is most certainly a cost saving, but also a life liberator. We are reducing seizures for patients across the area, and I would like the Minister to look at what we have done. Patients are getting that primary attention and are not having to wait for months for appointments with consultants. They have ongoing care with specialist nurses.
What we have achieved in South Thanet is a model that could be rolled out over many other specialisms, where GPs who are passionate about a subject can make the difference and ensure that we have a more effective and responsive service. Hopefully we will reach the target for epilepsy, which is for 72% of sufferers to be seizure free. I would welcome the opportunity to meet the Minister and to discuss our services in South Thanet further.
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.
Priti Patel (Witham) (Con)
I pay tribute to my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for securing this debate, and for his tremendous personal account of the condition of epilepsy, and how it has impacted on his life and his journey to Westminster and becoming a Member. I thank my hon. Friend the Member for South Thanet (Laura Sandys) for being frank and for providing powerful insights into the work and role of general practitioners in her constituency. Clearly, they are making a difference.
My contribution to this debate is about the structure of the NHS, especially in the light of the fact that significant and welcome Government reforms are coming soon. In Witham, the number of administrators and bureaucrats in the local primary care trust—Mid Essex PCT—has increased fourfold in the past 10 years. In this debate, we are talking about general practitioners, commissioning, the postcode lottery in terms of services, nurses, access to care, real care provision on site and the ability to deal with epilepsy. I am sure that the Minister agrees that epilepsy services could be served so much better by getting rid of a lot of the waste and bureaucracy. This is an opportunity to redirect the resources to ensure that epilepsy is given the right kind of local care provision and to ensure that GPs who are commissioning services are dedicated the right kind of resources and professional expertise that are so desperately needed out there.
One of my constituents is here listening to the debate. It is self-evident, from looking at my local PCT, that provision is hit and miss. It comes back to data, which we have heard a great deal about this morning. There is not enough data out there. I struggle with that notion when I hear locally about the bureaucracy in my PCT, which has been so vast that one wonders what it has been doing to secure data in the past decade. I plead with the Minister to ensure that all the resources out there are redirected to the right purposes to serve local epilepsy sufferers in the right way.
My hon. Friend the Member for South Thanet mentioned stigma, but I should like to talk about quality of life and referrals to specialists. I have heard from my constituent who is here this morning about how epilepsy can prevent people from getting back into work. In respect of anybody who is up and able and wants to be an active citizen and contribute to their local economy, or even make a difference in some service, it seems self-evident that we desperately need local services and agencies working together to break down the barriers of stigma; to work constructively to enhance the quality of life of epilepsy sufferers; and to be more accommodating and understanding of the needs of people going into the workplace, without being patronising, enabling them and supporting them perhaps even to develop careers in the field or profession in which they choose to work.
The Government have an opportunity to consider generic substitution in the round, without coming to any rash conclusions. We are talking about savings, in this era of the comprehensive spending review, but this is about understanding that epilepsy is a subjective condition that affects individuals differently, not about a one-size-fits-all approach in respect of the drugs and prescribing regimes. This is a plea to the Minister to ensure that the right decision is made on behalf of sufferers.
Mr David Amess (Southend West) (Con)
It is always compelling when colleagues speak from personal experience. That has certainly been the case today. I congratulate my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) on the way in which he introduced the debate. Indeed, his speech was so comprehensive that he has left little for other hon. Members to say. But being a Member of Parliament I will try to find something to add to this debate. I congratulate my hon. Friend on sharing his experience with us this morning. I am certain that he is still reflecting on what the history of this country would have been like if he had been elected as MP for Twickenham.
Colleagues have spoken about their personal experiences, so perhaps I could share some of mine. A number of my family members have suffered with epilepsy, although I will not name any of them because they do not want to be the subject of any intrusion whatsoever. All I will say is that it is scary when people are not prepared for what happens when someone has a fit. When a baby suddenly stops breathing it is stressful for parents who have not been warned about such a situation.
My hon. Friend mentioned people suffering from epilepsy perhaps being thought to have had a bit too much to drink. I am ashamed to say that I am guilty of having made that misdiagnosis myself and coming to the wrong conclusion. I am glad that he mentioned that.
The Minister and I were colleagues on the Health Committee. Throughout that time it occurred to me that, although it would have been a new contribution to the debate, we never had an inquiry into epilepsy. Now that my right hon. Friend the Member for Charnwood (Mr Dorrell) is chairman of that Committee, perhaps the Minister might like to consider that matter, together with my hon. Friend the Member for South Thanet (Laura Sandys), who is chair of the all-party group on epilepsy. That would be a good subject for a Health Committee inquiry.
Sudden unexpected death in epilepsy accounts for more than half of all epilepsy-related deaths in the United Kingdom. We know that with a clear understanding of epilepsy and good management of seizures, the risk can be minimised, as hon. Members have already said. The National Institute for Health and Clinical Excellence guidelines recommend that information about the problem should be provided to patients following a diagnosis of epilepsy. There is clear evidence that that does not appear to be happening. Perhaps all colleagues would be diligent about this situation and inquire about what exactly is happening. People who are diagnosed with diabetes or heart problems, for example, are made aware of the risk of death if their condition is not well managed. Epilepsy should be in that category and dealt with in the same way.
There is no national monitoring of epilepsy deaths. However, the Coroners and Justice Act 2009 highlighted epilepsy as one area in which standards could be developed. There continues to be an urgent need for research into the cause and prevention of the problem. Eight years on from the national sentinel audit that established the level of avoidable deaths, our understanding of sudden death in epilepsy is greater, but we still need to reduce the number of such deaths, as my hon. Friend the hon. Member for Blackpool North and Cleveleys said. We need more research into this neglected medical syndrome.
The White Paper reforms may offer a significant opportunity for some of the more neglected conditions in health care. It has been acknowledged that national targets, which I have deplored, ignored some conditions. Now the White Paper promises a relaxation in the use of targets and puts patient safety at the heart of the NHS.
In conclusion, if primary care practitioners are to be responsible for commissioning epilepsy services, they will need to be well informed on these issues, as my hon. Friend has made clear. They will need to move beyond the dreadful tick-box exercise for epilepsy in the GP contract and look seriously at the potential for achieving more positive outcomes for patients and a more cost-effective health service.
I ask the Minister to bring these issues to the forefront as we build on our excellent national health service.
Liz Kendall (Leicester West) (Lab)
It is a pleasure to serve under your chairmanship, Mr Streeter. I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing the debate. I particularly thank him and the hon. Member for South Thanet (Laura Sandys) for their brave, personal speeches, delivered with a frankness and honesty that is not always the hallmark of politics or politicians. Just by speaking about their conditions, they will have given strength and courage to thousands of people with epilepsy throughout the country. I am grateful to them for that.
Hon. Members have powerfully set out the scale of the problem and highlighted three key issues. The first is misdiagnosis: around 150,000 people are wrongly diagnosed with epilepsy or are diagnosed with the wrong sort of epilepsy. The second is poor quality treatment: patients may not see a specialist quickly enough and, because of the problems of misdiagnosis, thousands of patients take powerful drugs that are unnecessary or do not work effectively, and they must make repeated visits to their GP or go into hospital. Thirdly, because of poor diagnosis and treatment, there are unacceptably poor outcomes for individuals with epilepsy and for society as a whole. Only half of those with epilepsy live seizure-free, when the estimate is that 70% could do so. Of the almost 1,000 deaths from epilepsy every year, approximately 400 are avoidable—that is at least one unnecessary death from epilepsy every day of the year.
The estimated financial cost of that poor-quality care includes more than £20 million a year spent on incorrect drugs, and rises to more than £130 million if unnecessary GP appointments and hospital admissions are taken into account. That does not include the far greater costs to individuals and society as a whole for the thousands of people with epilepsy who cannot play a full role in their families, at work or in the community because they do not receive the care and support they need.
Following the efforts of patients and voluntary groups, many of whom are here today, understanding of epilepsy has increased in recent years. Last year, the all-party group on epilepsy met the then Health Minister, Ann Keen, for discussions, including on the findings from Epilepsy Action’s 2009 report, “Epilepsy in England: time for change” that NICE’s 2004 guidelines on epilepsy treatment are not being properly implemented in an estimated 90% of PCTs.
At a one-day conference for NHS commissioners in January, the then Minister spoke specifically about how to improve epilepsy services. She met specialist epilepsy nurses at the National Society for Epilepsy, and wrote to strategic health authorities asking them to consider how to improve services, including by increasing the number of specialist nurses. I understand that she intended to ask the Care Quality Commission to undertake a review of epilepsy services in the NHS. My first question to the Minister here today is: what plans do his Government have to increase the number of specialist epilepsy nurses and will they ask the commission to conduct that review into epilepsy services? My experience is that the commission’s reviews can make a real difference in raising awareness of such issues.
The key question today is whether the Government’s plans for the NHS will make the improvements that epilepsy patients desperately need. The key concern that we have heard about today is the future of commissioning. Clearly, PCTs have struggled to deliver high-quality care for patients with epilepsy, as they have with many less common conditions. That is and always has been a real problem in the NHS. How can the highest possible standards of care for less common conditions be delivered in every part of the country? If there have been difficulties in ensuring sufficient knowledge and expertise in 150 PCTs, that challenge will be even greater in the 500 commissioning consortiums that the Government want to establish.
The key issue that has been raised today is whether GPs have the necessary skills, awareness and interest in epilepsy services. Some do, and there are some good, expert GPs, such as those to whom the hon. Member for South Thanet referred, but many do not have the same skills and experience, and that is of great concern to patients with epilepsy. The expertise that does exist in PCTs is in grave danger of being lost. Many PCT staff who have been involved in commissioning are, understandably, looking for other jobs outside commissioning or outside the NHS. Will the Minister explain how he will ensure that GPs have the necessary skills and experience to identify and then correctly to refer patients to specialists? How will he ensure that GP commissioning consortiums have the necessary skills and expertise to commission high-quality epilepsy services?
My hon. Friend the Member for Scunthorpe (Nic Dakin) raised an important question. How will the Minister ensure that GP commissioning consortiums work with schools, local authorities and other care services? My local authority in Leicester has worked hard to build up relationships with the PCT, but that has been thrown up in the air and it must now develop relationships with individual GPs. That is a big challenge.
I want to make it clear that GPs must be more effectively involved in shaping NHS services. They are the first port of call for patients and their decisions affect 90% of spending in the NHS. Yet many GPs do not want and do not currently have the skills necessary to take on responsibility for commissioning £80 billion of NHS services. Despite claiming that they will end top-down reorganisation in the NHS, the Government continue to insist that all GPs must take on that role, and within a short time scale, but anyone who has been involved with the Government or the NHS knows that it takes a long time to change things in the NHS. PCTs are spending a huge amount of time trying to persuade GPs to become involved and to ensure that they have the right skills and expertise. Many people are worried, rightly, about whether PCT staff who are about to lose their jobs will want to put in that time and effort and, if they do, whether that time and effort would be better spent on improving patient care.
The financial costs of the Government's reforms are also significant. They have said that they will protect NHS funding in the comprehensive spending review, but the ageing population, increases in long-term conditions, and ever more expensive drugs mean that the NHS is still facing what the King's Fund and the NHS Confederation have called the biggest financial challenge of its life. Its overall budget may be protected, but it must make savings of £15 billion to £20 billion, and it has never before achieved that. Despite the Government’s claims that management will be cut by 45%, the King’s Fund estimates that the Government’s reorganisation will cost £3 billion. Will the Minister explain why his Government believe that yet another major, structural reorganisation is the best use of time and resources in the NHS, particularly in such financially challenging times?
Ultimately, what matters to patients and the public is that they get the best health care and the best value for money. The Government have said that outcomes in the NHS will be set out in the new NHS outcomes framework, and that the new national NHS commissioning board will be held to account for delivering those outcomes. The board will also take direct responsibility for commissioning some specialist services that used to be commissioned at regional level. The board will have a budget of more than £100 billion a year, but it is unclear how it will be held to account by Ministers or Parliament, who are responsible to the public for improving the NHS.
My final questions are as follows. Will the NHS outcomes framework include outcomes for epilepsy? Will the NHS commissioning board commission specialist epilepsy services, and will it draw on the expertise that was developed at regional level to do so? Will the Minister explain how the Government will ensure that the commissioning board has the necessary expertise on epilepsy services? Will patients be involved in determining outcomes and the commissioning board’s work? How will Ministers and Parliament hold the board to account? For example, if the board fails to include outcomes for services such as epilepsy, will the Government or Parliament be able to require the board to take action, or to remove individual members or the board as a whole?
Our debate today on epilepsy services will be mirrored in relation to a huge number of other conditions. People want to know how their condition will be improved by the planned changes. I am privileged that my first debate as a shadow Health Minister has been on this important subject, and I thank all hon. Members and the patients and patient groups who have come here today.
The Minister of State, Department of Health (Paul Burstow)
I start by congratulating the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing this debate and on the remarkable way in which he outlined a compelling personal case and posed some important challenges for the Government.
Before I respond to the hon. Gentleman’s points and to contributions made by other hon. Members, I would like to correct an error that I made in a debate on diabetes on 15 September. During that debate, I mistakenly stated that the Juvenile Diabetes Research Foundation supports the NHS White Paper. In fact, it has not taken a position either way, and I am happy to correct the record on that point at the earliest opportunity.
In introducing the debate, the hon. Gentleman gave a powerful account of why we must do better for the 450,000 people with epilepsy in the UK. He painted a compelling picture of the fear that the condition provokes and the fear of the aftermath—the “thief in the night”, as he put it. Many hon. Members have made powerful testimonies in this debate, and that is to be commended.
I also congratulate the hon. Gentleman on his recent appointment as vice-chair of the all-party group on muscular dystrophy and as vice-president of Epilepsy Action, an organisation that does excellent work to support and advise people with epilepsy. He asked me if I will meet him and other colleagues from the sector, and I would be happy to do that, together with his colleague, the hon. Member for South Thanet (Laura Sandys), who is chair of the all-party group on epilepsy. I hope that we can have further discussions about that.
I also welcome the hon. Member for Leicester West (Liz Kendall) to her new role. I understand that, in a previous incarnation, she worked as a special adviser to a former Secretary of State. I look forward to our exchanges in Westminster Hall and the main Chamber over the years to come. I hope that she will find the role as enjoyable and fulfilling as I do.
The debate has highlighted the many failings of the current arrangements for the design and delivery of epilepsy services. Those failings have been clearly articulated by many people, and in particular, the issue of stigma was raised by the hon. Members for Scunthorpe (Nic Dakin) and for South Thanet. I undertake to take that issue back to the Minister of State, Department for Education, my hon. Friend the Member for Brent Central (Sarah Teather), who is to meet colleagues in the sector soon, so that we can look at how to tackle that problem. It is not a matter solely for the Department of Health, but rather a wider societal issue and a challenge for the Government. We will discuss and look further at how to ensure clarity and proportionality in the regulatory burden.
Hon. Members have referred to the various statistics that make up part of the picture: 69,000 people are living with unnecessary seizures, and 74,000 people are taking drugs that they do not need. Nearly £200 million is needlessly spent each year on hospital admissions linked to poorly managed epilepsy. The 400 avoidable deaths per year—a tragic number—are largely the result of poorly controlled epilepsy.
The previous Government produced a string of policy documents designed to improve services and support patients with neurological conditions. The national service framework for long-term neurological conditions, and the NICE clinical guidelines on epilepsy, are both strong statements that the Government support. Plenty of sensible work has been done to improve support for people with all kinds of long-term conditions, such as setting out the need to have a more patient-centred approach to their care. The problem, which has been made clear in today’s debate, is that the words in those statements have often not been translated into practice. The failing is not of our shared intent, but of implementation. The previous Government’s top-down approach created a culture where only what gets measured gets done. That distorts priorities and, as the debate has demonstrated, leaves gaping holes in provision and lets people down in the ways that have been described.
The solution is not to publish more strategies or add more to the list of things that the NHS has to measure and account for. Instead, we should change the system entirely and record and value what really matters. That is what our proposed NHS reforms are about, and I welcome the opportunity to outline how those reforms will have an impact on epilepsy. We want to strip out unnecessary targets and bureaucracy and replace them with a system that recognises and rewards quality and overall patient outcomes.
We have already held a consultation on the new outcomes framework. I am pleased that a number of neurological organisations contributed to that process, including the Joint Epilepsy Council and Epilepsy Action. The framework will drive a better approach to service design and performance management across the NHS, including on issues of speed and accuracy of diagnosis. It will be the engine of change, giving us clear and coherent structures of accountability to drive radical improvements in standards from the bottom up, not the top down. My hon. Friend the Member for Southport (Dr Pugh) spoke about accountability, and I will say more on that later.
I am determined that specific issues to do with neurological conditions, and epilepsy in particular, should be appropriately reflected in the composition of the outcomes framework, and I will make that point to the NHS medical director, Bruce Keogh. I encourage other hon. Members who are concerned about this matter to ensure that they also make such representations. I undertake to look at precisely what contribution the Care Quality Commission can make; clearly there are potentially many thematic reviews that it could undertake—far more than it could carry out in any one year. It is a powerful tool for levering-up quality.
In his opening remarks, the hon. Member for Blackpool North and Cleveleys mentioned transition care. There must be significant improvement in that, because the transition from care in childhood to adult care is currently not good enough. We must ensure that we pick up and learn from the work carried out by the national director for children’s services, who has published guidance on improving the transition between child and adult services to ensure that everything possible is done to maintain people’s health and well-being. The subject of transition comes up more often that anything else, and we must ensure that we have a better, clearer focus on the transition between children’s services and adult services, and between primary and secondary care.
Mr Sam Gyimah (East Surrey) (Con)
The National Centre for Young People with Epilepsy is in my constituency and it is interesting to hear the Minister mention transition care. Would he be open to considering a clinical standard for paediatric epilepsy?
Paul Burstow
The Government proposals include a national quality board that will be responsible for considering potential areas for quality standards, and NICE will take that work forward. There is already a number of standards in the national service framework, but I will certainly give further thought to the hon. Gentleman’s point.
A number of hon. Members have mentioned information, and the Government want to give patients and the public all the information that they need to make informed choices and hold the NHS to account. We will shortly be launching a new information strategy to improve radically the range and quality of information available to patients, professionals and the public, so that there is increased transparency and strengthened accountability in the system.
Teresa Pearce (Erith and Thamesmead) (Lab)
The Minister mentioned information for patients, but one area of concern that has not been mentioned today is that involving women of child-bearing age. Currently, such women are meant to be counselled by their GPs, but sometimes that counselling is patchy or non-existent. One successful drug creates a significant increase in baby malformations, so a woman who finds herself pregnant must decide whether to carry on taking the drug with a risk to the baby, or stop taking the drug with a risk to herself. The risk of maternal death is almost 10 times higher for women with epilepsy. What can be done to make GPs take seriously the role they have when women are facing that terrible decision?
Paul Burstow
I am grateful to the hon. Lady for raising that point. In the proposed quality and outcomes framework for 2011-12, NICE has recommended a new indicator to encourage more GPs to talk to women with epilepsy about the drug risk during pregnancy. I hope that that will focus on the point that the hon. Lady has rightly raised.
Patients should be able to check up on local services right down to the performance of individual consultant teams, so that they can, if necessary, vote with their feet. That not only gives patients more control, but it exerts pressure on different parts of the NHS to make continuous improvements. On a professional level, it is important to ensure that there is better recording and sharing of information about services.
My hon. Friend the Member for Southport and the hon. Member for Pontypridd (Owen Smith) talked about the lack of information about neurological services at local level. I can tell them that the Department has developed a reference data set for local commissioners to use. That will give them a standard set of information to request from local providers about the different stages of care for someone with a neurological condition. Reference has been made to a dearth of data. I can tell hon. Members that there are data relating to the primary reasons for hospital admissions, readmission rates, average lengths of stay, out-patients, first to review rates and programme spend for neurology through the payment by result rates. All that information is on NHS Comparators, which is part of the NHS website. It is an online tool that presents all that information in a way that is accessible not just to professionals, but to the third sector. One of the challenges that I pose to hon. Members and to organisations with an interest in this field is to make more use of NHS Comparators, because it is a valuable tool for challenging commissioners and holding them to account and for ensuring that there is competitive localism—a real sense of comparing one area to another to ensure that we drive up standards and learn from the best.
Priti Patel
We have heard in the debate that epilepsy is a very subjective condition—it affects people in many different ways. We have also heard about the data challenges, and the Minister has kindly given us some insight into what comparators are out there. The fact is, though, that if someone is a sufferer, is on their own and is in desperate need of care and access to information, hearing about data comparisons is not necessarily of practical help. What practical measures exist for sufferers and for organisations that can give genuine support and guidance to epilepsy sufferers?
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.
Paul Burstow
Only one more time, because I want to ensure that I have done full justice to the debate.
Mr Gyimah
I thank the Minister for his comments on commissioning. In that context, I understand that there will be 150 clinical standards against which commissioning will be judged. It would be helpful for people who suffer from epilepsy to know what weighting and priority will be given to those clinical standards as GPs deal with commissioning.
Paul Burstow
The 150 quality standards that NICE will be responsible for producing will make up a key document that the NHS commissioning board will use to draw up the clinical standards that it will use to drive commissioning activity and hold GP consortiums to account for delivery. They will be rewarded against the outcomes that they achieve. That is an important part of the accountability mechanisms that will be in place.
Hon. Members on both sides of the Chamber talked about the need for early diagnosis and correct diagnosis. Where epilepsy is suspected or where there are issues about the management of the condition, patients should be swiftly referred to specialists to confirm the diagnosis and agree treatment options. I am very sympathetic to the calls made today for more specialists and good access to appropriate diagnostic equipment.
A number of hon. Members rightly mentioned specialist epilepsy nurses, who are particularly vital to providing patients with a stable presence in their treatment and ongoing care. I pay tribute to their work in supporting and advising patients and helping them to manage their condition effectively. However, it is not for me, as a Minister, to make decisions on how local NHS organisations spend their money. I hope that I have satisfied my hon. Friend the Member for Southport, who thought that I might say that. Centralised, top-down management is the problem, not the solution. The new system is quite clear. GP consortiums and NHS trusts will have outcomes to meet for their patients. They must consider, in the light of their own circumstances, whether recruiting more specialist staff or investing in new equipment is the best way to achieve those outcomes.
However, on the question of research and whether we need to test whether the evidence is robust, the evidence is clear, and it is clear in the guidance from NICE itself, that specialist nurses are important for helping people living with epilepsy. The guidance is clear and should be taken into account by those commissioning services. The long-term conditions delivery support team has developed a guide to help commissioners to make the strong business case for the very important investment in specialist epilepsy nurses.
I want to say something about innovation and efficiency, because that is not just about how many consultants and nurses are in a hospital; it is also about how well they are used to support people in the community. The best neurology departments are adapting, evolving and improving their working practices to meet their populations’ needs in the context of financial constraints and the need to increase productivity. There is a particular role for neuroscience networks in bringing specialist teams together with general practice and wider sources of support. A lot of work is under way in relation to, for example, the QIPP—quality, innovation, productivity and prevention—programme, whereby teams of clinicians are working together to promote innovation and drive out inefficiencies.
I shall give a couple of examples of where things are changing on the ground. In Dorset, there is a county-wide service whereby a consultant neurologist and specialist epilepsy nurses work with GPs and community teams across the region to give better support. In east Kent, networks of GPs with a special interest are joining forces with specialist nurses and local neurology services to deliver community-based epilepsy care. Those are highly effective models and they are the type of models that should be followed in the rest of the country; I certainly question why they are not.
Generic substitution was raised by the hon. Member for Witham (Priti Patel), the hon. Member for Pontypridd and others. As has been said, that is subject to consultation at the moment and I cannot pre-announce the conclusions, but I certainly share the concerns about consistency of supply that the hon. Member for Blackpool North and Cleveleys expressed.
Appointing a national clinical director is certainly something that we need to consider, particularly in the context of the implications of the reforms that the White Paper proposed, and we will consider that carefully.
Our proposals for the NHS will create the building blocks for real and positive change: a new transparency and consistency of purpose, built around an outcomes framework; a more responsive approach to commissioning led by GPs and local government; and much greater influence for patients through better information and choice and control over their care. I look forward to discussing these matters further with hon. Members through the all-party group and with the various organisations that represent the interests of people with epilepsy. I also look forward to taking the White Paper proposals forward, because I genuinely believe that they will transform services from the bottom up, making a real difference to the quality of life of people with epilepsy.