Baroness Ford
To ask Her Majesty's Government whether they plan to increase the provision of epilepsy services
Baroness Ford
My Lords, I thank all noble Lords for their attendance this evening. Despite my accent, I promise not to return to the question of an AV referendum.
This Question for Short Debate covers an important topic and I am very grateful for the time to address it. I welcome the Minister and thank her for her courtesies before today's debate. She will know that absolutely no slight is intended when I say that we would have been delighted to see the noble Earl, Lord Howe, in his place—because he has been such a stalwart champion for epilepsy services in his previous role as honorary chairman of NSE—but I am well aware that the noble Baroness understands the condition well, and we know that she will respond very thoughtfully to the points that will be made this evening.
I thank the Government for their decision not to proceed with mandatory substitution of generic drugs. The prospect of this change was met with absolute dread by many people with epilepsy. In lots of long-term conditions, but especially epilepsy, continuity and stability of drug treatment is absolutely essential, and even very small changes can have profoundly damaging effects. The Government did absolutely the right thing and we are grateful for it.
As the honorary president of Epilepsy Action, I declare my interest; as a parent of children with epilepsy, I declare my continuing frustration. Our story is like many other families—original misdiagnosis, years of trial and error in drug use, absolutely no continuity at the crossover from paediatric to adult care—in effect, experiencing all the highs and lows of treatment. Families who live with epilepsy understand all this and much, much more. This is a condition that affects many individuals and families in our country. Almost half a million people are affected by epilepsy. 990 people in England die every year of epilepsy-related causes, and tragically about 400 of these are considered potentially avoidable. Almost 70,000 more people with epilepsy could have their seizures controlled by good treatment, and almost 75,000—75,000—are taking aggressive drugs unnecessarily due to misdiagnosis.
This is an important point and one which I hope the Minister might reflect upon. There is a current misdiagnosis rate for epilepsy of between 20 and 30 per cent. We should ponder for one moment on what this might mean in other conditions and diseases. If this statistic was true for cancer, people would be told that they had the disease and treated aggressively for it, only to find some time later that this was not the case. Can we imagine the distress and scandal that that would cause? It is unthinkable. Of course, we do not have that rate for misdiagnosis of cancer, principally because every suspected cancer is referred to a specialist—and rightly so. People would not accept for a moment that they would be seen by a general physician with no specialist knowledge of cancer. Yet this is the situation with epilepsy. The NICE guidelines state that all people with suspected epilepsy should be seen by an epilepsy specialist. But half of all acute trusts in England do not employ a specialist, and anyone familiar with the condition knows the difference between seeing an epilepsy specialist and a general neurologist—it is the difference between night and day. Yet more than half of our trusts still have no specialist provision at all. It is appalling that in the 21st-century NHS such a high rate of misdiagnosis persists, with awful consequences for individuals and a massive waste of resources for the NHS. What plans are there are for improving this woeful situation?
Last year, Epilepsy Action published Epilepsy in England: Time for Change—a review of services that highlighted the incidence of misdiagnosis and also drew attention to widespread failings in service provision when measured against the NICE guidelines. We found that, despite the guidelines stating that people with suspected epilepsy should be seen urgently—that is, within two weeks—this was being ignored by 90 per cent of trusts. Only 10 per cent of people see a consultant within two weeks, and, as we know, there is no guarantee that that consultant will be an epilepsy specialist. As anyone with epilepsy will testify, the period between when they suspect epilepsy and when they get a confirmed diagnosis can be very frightening. Until treatment begins they are at greater risk of seizures, are understandably anxious and are at risk of suffering a full range of side effects and consequences. Our review found that in some cases, people had to wait 18 to 24 months for referral to a consultant.
The review also found that provision of specialist epilepsy nurses was poor. More than half our acute trusts do not employ a single nurse specialist, and the figure is even higher for primary care trusts. This is despite NICE guidance that specialist nurses should form an integral part of the care team. Everyone who lives with epilepsy will tell you that when they find a good consultant, it marks a turning point in their condition; but most will also say that finding a specialist epilepsy nurse transforms their quality of life. The hope that specialist nurses can give is immense. Specialist epilepsy nurses are also fantastic value for money in comparison to the greater costs that they prevent with their work. Perhaps I may draw the Minister's attention to the study carried out recently by John Moores University, which made it clear not only that there is a strong clinical case for specialist epilepsy nurses, but also that there is a very sound economic one.
A major step forward for the condition would be for the Government to make sure that the NICE guidelines are implemented. We are not asking for the moon; we are simply asking the Government to make sure that NHS workforce planning takes account of the need to train epilepsy specialists with consultants and nurses. We are asking for all people with suspected epilepsy to be able to see a proper specialist within two weeks. We are asking for all acute trusts to have the correct diagnostic equipment, for patients to have an annual review of their condition, and for those who want a comprehensive care plan to have one. These requests are not unreasonable. Why, uniquely, should people with epilepsy accept a second-rate service?
One further important issue is the potential legal case surrounding the distressing question of foetal valproate syndrome—a condition recognised since the 1980s and found in the offspring of mothers who took sodium valproate in pregnancy. Sodium valproate is a reasonably common anti-epilepsy drug. In this legal case, the families of children born with the syndrome are seeking reparations from the drug company for their children's problems. They claim that the company did not do enough to warn them of the risk of taking the drug in pregnancy. Unfortunately, in October the Legal Services Commission withdrew public funding from the 100 claimants. A responsibility on the part of the drug company may or may not be proved in the hearing, but the families of these children, many of whom live with serious and debilitating illnesses, deserve to have their point of view tested. In response to another question yesterday, the noble Lord, Lord McNally, said that any changes to the legal aid system would “protect the most vulnerable”—I think that that was the phrase. I cannot think of a better and more deserving group of people than these 100 claimants.
Sodium valproate is still being used by many women who may have no knowledge of the potential side-effects. Each year about 5,000 women who have epilepsy become pregnant, and we know from a survey in 2007 that only 21 per cent receive pre-conception counselling. We also know that about 20 per cent of pregnant women take sodium valproate during their pregnancy.
In 2004 a review was undertaken on behalf of the Medicines and Healthcare Products Regulatory Agency. The review agreed that several key principles should be included on sodium valproate product information but, critically, stopped short of advising whether the drug should be avoided in pregnancy. In contrast, the Food and Drug Administration agency in the United States issued a letter in 2009 to healthcare professionals across the US cautioning that women of childbearing age should be treated with valproic acid only where it was absolutely essential.
So I would like to ask the noble Baroness if the Government would consider asking the MHRA to review its guidance on anti-epileptic drug use in women of childbearing age and, in so doing, take into consideration any new evidence that links anti-epileptic drugs to major congenital malformation, neuro-developmental problems and poorer health outcomes in offspring.
I am grateful to all noble Lords for participating in this debate tonight. We all understand how devastating this condition can be for the many thousands of people who suffer, for their families and their carers. Proper basic service provision would also alter, and immeasurably improve, the lives of many people who frankly have enough to deal with without the NHS letting them down. This is an important issue and for too long we have been failing people with epilepsy by allowing and tolerating standards of care that simply would not be acceptable in most other conditions. It really is time for change.
Baroness Pitkeathley
My Lords, I congratulate my noble friend on securing the debate this evening and on speaking to us powerfully and movingly from her personal experience. I also congratulate her on her fortitude and patience—perhaps I should extend those congratulations to everybody who is going to speak—for waiting until this late hour to start the debate. In my short input—and it will remain short, in spite of the extra time given to us—I want to focus on a problem associated with epilepsy to which the noble Baroness has referred: the difficulties faced by those who are involved with caring for sufferers. I hope the Minister will be able to respond by assuring the House that carers will be included in any plan for improving support provided to sufferers of epilepsy.
The House is familiar with the problems faced by family carers who provide the bulk of health and social care in our country. The statistic of saving £87 billion for the whole of our society is one that many members have heard me quote—I dare to say ad nauseam. If you have a loved one with epilepsy your duties may include keeping them safe during a seizure; giving first aid or emergency medication; helping with the taking and monitoring of drugs; providing descriptions of seizures for medics where necessary; acting as an advocate or representative; providing transport; and perhaps helping to organise home adaptations. And, of course, as we have heard, those with epilepsy may have a whole range of other conditions that require assistance from their carers.
While much of what these carers do is the same as many of the 6 million carers in the United Kingdom, there are some special difficulties to which I want to draw the attention of your Lordships. The first concerns the onset of caring, which, because of the nature of this illness, is likely to be sudden and quite unexpected; there is no time to prepare or to get information which could help you as a carer. Many of these carers are therefore very often at a loss; they are finding things out by accident, sometimes—very often, actually—not even recognising themselves as a carer. You see yourself as a wife, a mother, a husband, yet identifying yourself as a carer is absolutely key to accessing the right kind of information.
Secondly, as we have often heard, this illness is by its nature spasmodic and changes over time. Therefore there is no simple analysis of the help that is needed. Moreover, since sufferers are, or at least seem, perfectly all right in between episodes and the seizures themselves are often unwitnessed, it can be difficult for the carer to convince anyone that help is needed. This may be particularly so in the case of the psychological effects of this illness: the stress, depression, mood changes and frustration which are so often a feature. Many local authorities, for example, providing social services and social care, do not recognise epilepsy as a condition which has particular care needs. And so the carer’s assessment, which is the right of every carer, hard-fought for by Carers UK, myself and others, is therefore denied them. Without an assessment, there is no access to local authority care packages. Local authorities need guidance, and it would be good if the Minister could assure the House that some of these issues of hidden conditions will be addressed in the refreshment of the national strategy for carers.
One more concern I have is the attitude of some professionals to the carer in this situation. No one is more committed than I to the rights of the user, the patient; I hope my record shows this. However, the fact is that in many cases the carer is more of an expert in the progress of the disease, the nature of the seizures, the signs leading to them and the effects of drugs than the user him or herself, and certainly more of an expert than many of the professionals with whom they come into contact. The carers should therefore be consulted and their opinions taken into account, of course with sensitivity to matters of confidentiality and with the permission of the cared-for person. Very often the carer’s view is completely overlooked—often, I acknowledge, with the best of motives. The doctor or nurse is concerned to help and relieve the carer, but this is not a good use of the expertise the carer has developed. Their views must be sought and taken into account. A lack of specialist knowledge has been highlighted by my noble friend Lady Ford. Yet carers themselves often have specialised knowledge—only of one particular case, but it is very specialised and should not be ignored.
Your Lordships will be aware that much progress has been made for carers in recent years, but there are serious concerns about how the reforms to welfare and the social care system will affect them. I hope the Minister will be able to reassure me and the House about the coalition Government’s commitment to carers. By way of an aside, I say to the Minister that I will not be in my place when she sums up but I will be in the House, on the Woolsack.
Baroness Hussein-Ece
My Lords, I also pay tribute to the noble Baroness, Lady Ford, on securing a debate on this important issue affecting some 500,000 people in the UK. The vast majority of epilepsy starts in childhood. Around one-third of those children will not be helped by anti-epileptic medication and will often struggle with increasing disability, learning difficulties and behavioural problems.
Epilepsy has touched my own family quite dramatically. Six years ago, a close member of my family developed epilepsy as a small child, after contracting a severe bout of chicken pox which led to the onset of difficult-to-control epilepsy and a whole host of related challenges. In our experience, it took a long time to get the correct diagnosis, as referred to by the noble Baroness, Lady Ford, with long waits for hospital appointments, tests and screening. It also took a long time to get him on the correct treatment after he did not respond to conventional medication, which consisted of aggressive and increasing levels of medication with distressing side effects. It was only after his parents continued to push for a treatment that they felt would control his seizures and give him a better quality of life that they were finally able to use the ketogenic diet. This diet has helped thousands of people over many decades. It was popular until the 1920s, but had fallen out of favour as new anti-epileptic drugs were developed.
I am grateful to the charity, Matthew’s Friends, for the briefing it sent me. Matthew’s Friends was started by Emma, the mother of 15 year-old Matthew, who developed severe epilepsy when he was just nine months old. After several years of trying innumerable medications, which did not control his epilepsy and led to serious side effects, Emma asked if her son could try the ketogenic diet, only to be told the diet did not work.
Six years later, Professor Helen Cross, who now chairs the medical board of Matthew’s Friends, began a research trial of the ketogenic diet at Great Ormond Street. Matthew was one of the cohort of children with severe epilepsy who was enrolled on to this trial. Within two weeks of starting the diet, Matthew’s seizures had reduced by 90 per cent and within eight months he was off all medication, but sadly not before suffering serious brain damage after years of seizures.
We have had a similar experience with the child in my family, whom I mentioned. His seizures have decreased dramatically, and although he still has severe learning difficulties and needs a lot of care, with the diet he has made enormous progress. It was quite transforming to see him actually making eye contact, learning to speak again and engaging instead of sitting spaced out and drooling in a corner. Where medication failed, the diet worked.
Sadly, this is not available to everybody who may need it at the moment and there are not enough trained specialist dieticians to allow for more people to have this option. Can the Minister say what is being done to ensure that people with epilepsy have access to as wide a range of suitable treatments, including this diet, as possible?
I turn to the need also for better co-ordination and training for those who have to provide an emergency response for somebody who is having a prolonged epileptic seizure. This could mean schools, hospitals and, importantly, the emergency ambulance services.
During my time as a local councillor in Islington, I chaired a scrutiny review into the tragic case of 15 year- old Kayleigh Macilwraith-Christie, who died after delays in an ambulance getting to her, and the inability of the technicians who attended to administer suitable anti-convulsant emergency medication for prolonged epileptic episode.
The London Ambulance Service conducted its own investigation into this case and gave evidence at the scrutiny review that I chaired. In its response it said:
“We have since reviewed our response protocols for patients reported to be suffering a prolonged epileptic seizure or series of seizures, and have put in place procedures to ensure that control room staff will always look to send a paramedic to the relatively small number of calls we receive to these patients every year. We are also continuing to discuss with various bodies the possibility of emergency medical technicians being able to administer anti-convulsant drugs in the future”.
Is the Minister confident that we are now able to provide a more suitable response to these emergencies and that in particular the emergency medical technicians who may attend such an emergency are able to administer anti-convulsant drugs, which three years ago was not the case? I would be very grateful if there is any further information about whether lives could be saved in these emergency situations.
Lord Patel
My Lords, it is a privilege to take part in this debate. I thank the noble Baroness, Lady Ford, for initiating it even though the time is now late. Epilepsy is defined as a tendency to have recurrent seizures, commonly known as fits, caused by a sudden burst of excess electrical activity in the brain causing a temporary disruption to the normal messages passing between brain cells. As has already been mentioned, it affects about one person in 130 in the United Kingdom. If the quality of the services provided to people with epilepsy were measured on the basis of outcomes—that is, measured by appropriate diagnosis, appropriate and timely treatment, the education of the patient and carers, and avoidable deaths—the services currently provided would be regarded as a total failure. The cost of this poor care is estimated at £190 million per year. Health outcomes for people with epilepsy are poor.
I shall confine my comments to the care of children and young people with epilepsy and the care of mothers with epilepsy during pregnancy. As an obstetrician I have looked after many women whose pregnancies were complicated by epilepsy. Epilepsy is the most common neurological condition among children and young people, affecting around one in every 200 in the population; that is, approximately 60,000 young people in total in the UK. On average, there is one child with epilepsy in every primary school and five in every secondary school. Although the national numbers can be calculated, local and regional numbers are not. For example, a recent Epilepsy Action survey found that only 18 per cent of primary care trusts could even estimate how many children and young people in their area had the condition, making it very difficult for them to plan appropriate services for this important group.
As has already been mentioned, formal clinical guidelines from the National Institute for Health and Clinical Excellence exist, but they are not implemented in many areas. This means that children who have had seizures are typically referred to general paediatricians rather than paediatricians with training and expertise in epilepsy. From the very beginning, that makes the outcome for these children poorer. Misdiagnosis is an issue. Up to 40 per cent of children referred to a specialist clinic do not have epilepsy when fully assessed. As the noble Baroness, Lady Ford, has said, this compares with 20 per cent to 30 per cent misdiagnosis in adults.
Children and young people with epilepsy have a poorer quality of life than children with other long-term conditions, such as asthma and diabetes. There are 365 avoidable deaths per year of children and young people with epilepsy. Sixty per cent of children and young people with epilepsy have complications. Too few children are offered, or referred early enough for, the surgery which could cure their epilepsy or reduce their seizures.
A campaign conducted by the National Centre for Young People with Epilepsy suggests 10 “levers” which would improve services for children with epilepsy. NHS commissioners should know: the number of children and young people with epilepsy in their area; the level of resources they have in place to support these children and young people; the waiting times faced by children and young people with epilepsy for initial appointments, diagnosis, treatment and tertiary assessment; and the current perceptions of children, young people and their parents of the epilepsy services. NHS commissioners must adopt: one or more care pathways for children and young people with epilepsy, ensuring that they are seen by paediatricians with training and expertise in epilepsy; and an easy to use and efficient process for referring children and young people to specialist epilepsy services. NHS commissioners must ensure: that every child or young person with epilepsy is offered a care plan, and that there is a high adoption rate; and that every child or young person with epilepsy has their case reviewed at least once a year by a health professional with expertise and training in the epilepsies. There is very good evidence that, if diseases and chronic conditions in children are managed well, followed up regularly and assessed for outcomes regularly, their outcome is optimal. Children and young people should have easy access to high-quality, multidisciplinary services, such as speech and language therapy, and psychology.
As has already been mentioned, a survey of trust services provided showed that more than 90 per cent of trusts were failing to meet the two-week deadline for a specialist appointment. Most trusts do not employ a neurologist with a specialist interest in epilepsy. More than 50 per cent of trusts do not employ a single epilepsy specialist nurse, who, as has been said, can make a lot of difference in the care of these children.
I turn to the care of women with epilepsy, which the noble Baroness, Lady Ford, summarised extremely well. The risk of a mother with epilepsy dying in pregnancy is nine to 10 times higher than in those mothers who do not have epilepsy. As the noble Baroness mentioned, nearly 5,000 women with epilepsy become pregnant each year, but a survey found that only 20 per cent receive optimum care. That includes care from an obstetrician and pre-pregnancy counselling. Such counselling is extremely important for these women because it makes the difference in housing an uncomplicated pregnancy and delivering a baby with less risk of complications developing. It is important that their drugs are changed to those that pose less risk to the foetus. These women are often on risky drugs, one of which, as has already been mentioned, is sodium valproate.
Care from an obstetrician with a specialist interest in looking after women with epilepsy working together with a physician with an interest in epilepsy in pregnancy is extremely important. However, this is currently not available to 80 per cent of women with epilepsy in pregnancy. It is not surprising therefore that their risk of maternal death and complications such as spina bifida in the foetus is so high. Failure to provide appropriate care in terms of the right drugs administered at the right dosages, as well as close monitoring of drug levels, adjuvant therapy with folic acid and other treatments increases the risk of maternal complications and death, foetal abnormalities and so on.
My questions for the Minister are simple. Why are trusts not adopting the NICE guidelines and why are so few performing to the standard of the guidelines when they are assessed? What will the Government do to make trusts adhere to these guidelines?
Lord Smith of Leigh
My Lords, I signed up to a dinner break debate. It is now somewhat beyond my normal dinner time, so I shall try to be as brief as possible. I start by declaring my interests. I, too, am a member of the All-Party Parliamentary Group on Epilepsy, and through that became a vice-president of Epilepsy Action. I am also the leader of Wigan Council, and the reason for mentioning that will come later. The all-party group, although it was not much to do with me, has made some significant contributions to the understanding of epilepsy and has had some distinguished members—not only the noble Earl, Lord Howe, but also David Cameron, for obvious reasons.
At this point in a debate a lot has been said. My noble friend Lady Ford introduced the debate with a speech that showed her comprehensive understanding of the problem. She came from a personal angle, and we thank her for that as well as for securing the debate. It is not her fault that it is being held late. I want to pick up on two areas that have not been talked about very much. The first is the role of Epilepsy Action in the light of government policy, and the second is the impact of changing government policy on the possible treatment of epilepsy.
For 60 years Epilepsy Action has been making a real difference not only to sufferers of epilepsy and their families, but also by contributing to a wider understanding of the condition. It seeks to improve the treatments available and to engage with partners in education, health and social care. I was impressed by the description in the annual report of its website, which has received almost half a million hits, and I recommend that noble Lords visit it. In the past year, the organisation provided materials for 170,000 individuals and has helped in 16,000 personal cases. That is a lot of help for families who turn to Epilepsy Action when there is not much more on offer. I want also to refer to the work of the local groups, which is very important. I have become engaged with the group in my area. It provides mutual support for families by ensuring that, if necessary, there is a shoulder to cry on.
The Government may think that Epilepsy Action is a blueprint for the big society, but the organisation has been fulfilling its role for 60 years. However, we need to understand that it does not replace what is going on in the public agencies; rather it provides support and help for families. Together they can do well, but Epilepsy Action cannot be used as a replacement.
The two areas of policy I want to briefly mention are the health White Paper and the consequences of the CSR. Noble Lords have referred to the weaknesses in the current commissioning processes within the health service. In the health White Paper we are proposing to take commissioning from a number of professional organisations, such as the PCTs, and put it into some newly created organisations—the GP commissioners. What worries me is whether we will get a consistent pattern in terms of the size of those areas. Will they be geographically sensible? Noble Lords have mentioned the importance of the specialist epilepsy nurse. Will the new organisations be of a size where it would be practical to employ such a person? In this complex and new system, will epilepsy have priority? I think that is what the Government need to ask as we come to understand that. How will epilepsy make itself heard as a condition and get the reforms that it needs that noble Lords have mentioned?
Finally, I want to turn to the CSR and to my own specialist area of local government. I remind noble Lords that local government was one of the biggest losers in the comprehensive spending review, with a headline figure of 28 per cent—but do not be fooled by that; for many areas it will be much higher. Of course, it is not a consistent 7 per cent over four years because the biggest hit is in year 1. Now most local authorities are planning significant reductions in their spending for the next 12 months. Of course we will all try to do what we can for efficiency, but there will be significant reductions in services. These include services that families with epilepsy have relied on in the past and would like to think they can continue to rely on, whether in social care or in education support. Unfortunately, all these services cannot be left untouched by the scale of those cuts. In the forthcoming months, announcements will be made, and I am sure that families will find that the services they value will be reduced and they may be charged for. All these things will have to be considered by local authorities. I am just praying in aid that we do not simply ask the families to blame those who are making the cuts but to think where the responsibility lies.
There have been some strong cases made by noble Lords speaking before me of the need to improve the services to epilepsy sufferers and their families. What I am concerned about is not whether we get improvement, but that we do not get deterioration because of other impacts.
Lord Stevenson of Coddenham
My Lords, I, too, congratulate the noble Baroness on introducing the debate and on the comprehensive but succinct words she used. They have saved me a problem and I have absolutely no intention of using either the time I was allowed or the longer time. I think we must have had the same briefing notes and, if I ally them to a number of things that other speakers have said, most notably the noble Lord, Lord Patel, I have virtually nothing to say.
However, I would like to put a thought in the Minister’s mind for when she goes back to the department. I believe that this is an area of medicine where there have been dramatic improvements over the past five to 10 years and where the infrastructure and the system have failed to catch up with the improvements and their potential effects. To put it at its crudest, in street language, the system—the NHS—and people who want to take credit for it are missing some very easy wins and low-hanging fruit.
I declare two interests: first, I am a vice-president of the National Society for Epilepsy. The noble Earl, Lord Howe, is our patron, whom we honoured recently by creating a lecture in his name—that is almost unheard of. I would like to send back the message that he has been a fantastic patron. Secondly, one of my four children has epilepsy.
I have been brought up to speed on this subject and there is very good news. If I may bore your Lordships by talking about my child—I hope that my epileptic son does not read Hansard—yes, he has a cocktail of drugs every day; yes, he cannot drive and there are various other things he cannot do; and yes, he lives with a certain insecurity, as do we all. However, he leads a very normal life. He has just finished an MBA INSEAD; he is starting his own business; he has a very good social life; and he neither sees nor hears any stigma. He is basically normal. This would not have been possible 20, probably 10, years ago; there have been dramatic changes.
The only thing I will say that has not been mentioned by others, probably because they would take it for granted, is that there have been dramatic changes in genetics and brain screening. The people at Queen Square, Professor John Duncan, Professor Sanjay and various people working in the area who are world leaders in the field—I imagine most people read the article in the Guardian today on the same subject—have a fantastic job because they are improving people’s lives almost every week of the year.
So that is all good news. The problem is—which is why I mentioned him—my child is one of the lucky minority and there are, of course, people with epilepsy with intransigent problems. However—horrible as it is—modern techniques of surgery are improving so dramatically as a result of MRI scanning that even they are getting help. The point I wish to make is that this illness is much more widespread than was thought in the stigmatised age. The figures show that it is ridiculous how many misdiagnoses are made; that it is ridiculous how much money is being spent because epileptics are classified as disabled when they are not and need not be; and it is ridiculous how many people who have got what my son has got—reasonably bad but not terrible epilepsy—are not being given the cocktail of drugs that he is given.
I am quite pleased that I am well under the first time limit. I am not a scientist; I have lived with this issue for 15 years and I have got heavily involved with it. I believe that decent, highly motivated people in the Minister’s department and other places have failed to grasp the factual implications of the changes in science. I come from business and I believe that for relatively little money a self-financing programme over 18 months could be established. I shall not give all the figures but with the between £20 million and £30 million lost in misdiagnosis and £240 million lost on people classified as disabled, a large number of whom do not need to be, you could train many epilepsy nurses and bring in and finance more specialists. I would love the Minister to go back and ask the department whether this is an area where people have not caught up with some easy wins for our collective health.
Baroness Wheeler
My Lords, I, too, thank my noble friend Lady Ford for initiating the debate and, like others, pay tribute to the tireless work she has undertaken on behalf of people with epilepsy, particularly as president of Epilepsy Action. We are fortunate to have present and speaking in the debate noble Lords who have made significant contributions to highlighting this issue and to campaigning to address the serious problems in health and education provision for people with epilepsy.
Previous speakers have clearly set out the context of our debate: the shocking numbers of deaths that could be avoided with improved diagnosis and care; the devastating scale and impact of misdiagnosis and mistreatment; and the huge extra care and drugs costs to the NHS that this brings—£189 million estimated by the Joint Epilepsy Council. Sixty-nine thousand more people with epilepsy could have their seizures controlled with good treatment.
The 10-Minute Rule Bill that my honourable friend Valerie Vaz, the MP for Walsall South, introduced last week called for action plans for the provision of health and education services for children and adults with epilepsy and related conditions. Her “big on action, low on cost” approach draws on the research by epilepsy charities which shows clearly how lives could be saved and care substantially improved at the same time as making short and longer-term NHS savings.
So often in healthcare we face the dilemma of affordability in making the shift from funding on crisis and acute care to prevention, but in this case the evidence for moderate investment now to effect changes which would begin to impact on the care and quality of life for people with epilepsy or those wrongly diagnosed or mistreated is overwhelming. Fifty per cent of people with epilepsy in the UK make a full contribution to society because their condition is controlled and an estimated further 20 per cent could join them with good treatment.
I endorse the timely reminder from my noble friend Lady Pitkeathley of the everyday reality facing the carers of people with epilepsy. Through my links with Elmbridge Carer Support in Surrey, I recently spoke to a carer whose wife has had epilepsy for 30 years. In terms of diagnosis, it is the familiar story we have heard during this debate: eight years of initial misdiagnosis with dramatic improvement in treatment and quality of life after referral to an epilepsy consultant specialist. She now has good-quality support from the local GP and the carer told me that he could not have helped his wife have the quality of life she has without that support.
Her condition never stabilises. Sometimes she is seizure-free for two weeks and then she can have minor or major seizures on a daily basis. This fear of when the next seizure will happen is one that many people with epilepsy live with. Her husband has been a full-time carer since 1992, when the firm he was working for closed and he no longer had a sympathetic boss to help him stay him in work and undertake his caring commitments. This is another familiar story for carers.
The carer is 64, his wife is 70; they are entirely dependent on welfare and disability benefits and, like thousands of others, they live in daily fear of the letter dropping on the mat that says their already inadequate income will be reviewed. He wants to care for his wife, but he needs support to do the best job he can.
I note that the Department of Health’s recent press release on social care personal budgets gives the example of a woman with epilepsy who uses her personal budget to pay for a seizure alert dog. I hope that, as the number of people with personal budgets increases, there will be flexibility to provide real support to people living with long-term health conditions and their carers.
We have heard that good care treatment means the development of more centres of special excellence and the employment of more epilepsy specialist neurologists, key posts under the NICE guidelines, so that assessments can be made and the type of epilepsy can be diagnosed at the earliest stage. It also means ongoing access to an adult, paediatric or learning disability epilepsy specialist nurse. The 2009 research report from Epilepsy Action on ESNs clearly demonstrates the necessity of this role. This specialist care needs to be available locally in acute services and in the community if the high rate of misdiagnosis is to be addressed, symptoms managed and controlled and appropriate advice provided. I look forward to hearing the Minister’s response to the questions from my noble friend Lady Ford about what plans she has to increase the number of epilepsy specialist nurses.
As we have heard in so many of the debates in this House on specialist areas of care—motor neurone disease, Parkinson’s, diabetes—the great concern from health organisations, charities and patients’ groups is how these key services will be commissioned in the future, under the Government’s proposals for GP commissioning. How will these huge and expensive structural changes improve the treatment of their conditions? How will 500 GP consortia obtain the specialist knowledge, skills and awareness to commission these and other key specialities when the average GP will have had experience of only a small number of people with these conditions? One recent estimate I have seen, on the basis of current statistics, was that most GPs will have seen, on average, around 10 people suffering from epilepsy.
How will the Minister ensure that GP consortia commissioners will have the necessary expertise and specialist support to commission epilepsy services? How will the NHS commissioning board ensure consistency across consortia and how will its own expertise be developed? Will epilepsy services be one of the regional commissioning roles it takes over? How are future standards of care and service to be measured? Will the NHS outcomes framework include outcomes for epilepsy?
In summary, I thank again my noble friend Lady Ford for initiating this timely debate and I look forward to the Minister’s responses to the issues and questions that have been raised.
Baroness Northover
I, too, thank the noble Baroness, Lady Ford, for initiating this very important debate. I know that she has a strong and long-standing interest in this area, as, clearly, do other noble Lords. My noble friend Lord Howe has a very strong interest in this area and it was a conflict of interest which led to him asking me to take this debate rather than taking it himself. He retains his extremely strong interest in provision of services for epilepsy.
As the noble Baroness, Lady Ford, gently alluded to, I have my own experience in this area through two close relatives. One of them developed epilepsy in his late 50s and faced the trauma of potentially losing his career and his life’s work. He needed to take mind-altering drugs in order to prevent that loss. The other is blissfully unaware that she has developed epilepsy as an offshoot of corticobasal degeneration. It is therefore down to me and her carers to ensure that, vulnerable as she is, all possible care is taken of her.
Noble Lords have painted a compelling picture of why we must do better for the 450,000 people living with epilepsy in this country. We have heard from the noble Lord, Lord, Lord Patel, that it is not a straightforward, simple disease with one name and one set of manifestations and causes, but that there are a variety of these. However, as the noble Lords, Lord Patel and Lord Stevenson, and others have said, there is a great deal of understanding of epilepsy, so theoretically things should be going well. Given the good understanding of how to improve services and support for neurological conditions, then, why is that not happening?
There have been dramatic changes, as the noble Lord, Lord Stevenson, says, with regard to the understanding of the disease. My relative who could potentially have lost his career had extraordinarily good treatment at Queen Square and is now living, in the same way as the noble Lord’s son, a normal life. Given all of that, why are things not working as they should? The national service framework for long-term neurological conditions and the NICE clinical guidance on epilepsy both offer a blueprint on how to deliver high-quality service to people with epilepsy, yet, as we have heard, this does not necessarily translate into good practice. We can see that in the epilepsy action paper and the all-party group report on the issue.
It seems to us that it becomes even more important that the reforms proposed in the NHS White Paper help to deliver the desperately needed improvements in services. How might that be achieved? First, we seek to bring decision-making much closer to patients and clinicians. It is not, pace the noble Lord, Lord Stevenson, simply down to the Department of Health deciding what has to happen with regard to a specific disease. It is important that the patients, the carers and the clinicians who know what is happening are better able to commission the kind of care that they need. That needs information—it is important that far better information is available within the health service—and it needs pathways to be spelt out to GPs so that they can commission appropriately.
The aim of reorganising the health service so that it brings this process closer to the patients and clinicians is that the commissioning should be more effective. That will be the test of it, and we will need patients and patient groups involved in it to ensure that it is taken forward and monitored and that the possibilities are fully exploited. Under the proposed new system, people should also have much more information about services, more choice about their treatments and more influence over how healthcare is shaped in their community. Local HealthWatch organisations will ensure that views and feedback from patients and carers feed into future decisions about shaping local health and social care.
We have to ensure that GP commissioners have the skills and awareness that they need to make these decisions. There has been a lot of discussion, to take up the point made by the noble Lord, Lord Smith, on the size of the consortia and what makes sense. Obviously, those commissioning may have limited experience—in the case of, say, neurological diseases. It is extremely important, therefore, that there are guidelines on what they should look at and how to access the best support. Again, it does not make sense simply to lay down in each particular disease that someone should do this, that and the other.
The noble Lord, Lord Darzi, developed NHS Evidence, which is self-evidently necessary. It is an online resource with information on treatment, on pathways in different diseases, drug treatments, and so on. This was extremely welcome—why it was not there in the first place, I do not know. It should have been developed years earlier, in my view. It is a reflection on the health service that has been up to now been driven by the Department of Health.
In addition to that kind of support, the NHS Commissioning Board works with a range of expert organisations to make sure that the GP leaders get the right support. It sets commissioning guidelines, commissions quality standards from NICE and encourages approaches that promote joint working between health and social care. This is extremely important here. It also makes sure that there are ongoing resources so people can tap into the latest information and the latest research. All those things are extremely important for the consortia’s commissioning.
It is obviously very important to see how this works in practice and that is why we have recently announced the Pathfinder programmes. In effect, these are pilots of GP consortia which are keen to make faster progress under existing arrangements and want to take on additional responsibility for commissioning services. The scheme will enable GPs working with other healthcare professionals to test the different designs on how this is best done. It is extremely important that we all learn from that. Expert groups, such as the ones that have been represented here, should monitor what is happening, see how it is working out in practice and inform us so that we can put into place for the country as a whole something which works as well as possible.
As I have mentioned, it is extremely important to have information. The noble Lord, Lord Patel, referred to it not being known how many cases there are in particular areas. That surely should be a thing of the past. I hope very much that the promotion of information within this system should help to counter that. For example, last week the NHS Atlas of Variation in Healthcare was published. It is very controversial—some areas seem to be doing very well and others are embarrassed that they are on the “Today” programme defending their terrible record. Actually, that becomes a lever for trying to improve things, by asking what is being done differently somewhere else and what can be learnt from that, because we do not want to find ourselves publicly in that position again. It is a very useful way of trying to address the health inequalities noble Lords have talked about.
The long-term conditions delivery support team is already working to develop skills and awareness. It has been developing a new commissioning resource pack in this area, bringing together information on good epilepsy services, so there are sources of information that will help the GP consortia.
On specialists, this again is an ongoing concern that has run through many different diseases, at many different times, right through the history of the NHS and prior to that. It is extremely important that cases get referred to the right specialists and that the specialists are there to take them forward. That may mean that a paediatrician, for example, recognises that they need to refer the patient to somebody who is an epilepsy specialist as well.
I see that I am running out of time, despite all the extra time that we were given. I am very sympathetic to the idea of support for specialist nurses. My own contact with them in relation to my mother shows how very useful they are.
I was asked about the epilepsy drug sodium valproate. We are acutely aware of the situation of the families. The authorised product information on this drug for prescribers contains advice about its safety. Taking up the point of the noble Baroness, Lady Ford, I will definitely take the idea of reviewing this back to the department. We obviously have to make sure that women are guided by very good advice on pregnancy.
My noble friend Lady Hussein-Ece asked a series of questions. She was concerned about what had happened in relation to the emergency services in one case. We understand that if an epileptic fit is confirmed in a 999 call, there should be an appropriately trained medic in the ambulance. If it is not flagged up, there may be a problem. Some of the staff who go out in ambulances would have the ability to cope with such a case; others would not. However, all staff are trained to deal with epileptic cases, so the dreadful case that the noble Baroness mentioned should not, one hopes, recur. However, we always need to learn and move on.
The diet that the noble Baroness mentioned is available on a limited scale. It suits some children but not others. The most important thing, here and everywhere else, is that there should be good research. Areas like this should be evaluated very carefully to make sure that best practice can be extended and that, where something is not seen as being appropriate, it is properly evaluated.
On carers, I am sure the noble Baroness, Lady Pitkeathley, is well aware of the coalition’s commitment to linking social care and health, and to supporting carers. There will be additional resources for GP training to increase GPs’ awareness and understanding of carers’ need for support.
I am running out of time but, in conclusion, I stress that the Government do not and never will have all the answers. We have a vibrant and active charitable and voluntary sector. We depend a great deal on the advice that is fed in and the way that areas are flagged up. Paul Burstow, my colleague in the other place, will meet the epilepsy charities soon to discuss the opportunities that the new agenda poses for them. We are keen to involve people, and keen that the reforms of the NHS and social care should make sure that patients and clinicians are better able to seek the kind of assistance and care that they need. We hope that will help to bring standards up to those that we know exist for many, but far from all, who are being treated for epilepsy.