§ 7.45 p.m.
§ Baroness Gould of Potternewtonrose to ask Her Majesty's Government what steps they intend to take to implement the recommendations of the section Epilepsy—Death in the Shadows of the Chief Medical Officer's annual report 2001.
The noble Baroness said: My Lords, I am pleased to have the opportunity to initiate this short debate on epilepsy during National Epilepsy week and to thank those noble Lords who will be participating.
I start by declaring an interest as president of the British Epilepsy Association and chair of the All-Party Group on Epilepsy.
I wish to preface my remarks by highlighting the prevalence of epilepsy and touch on the consequences for those affected. Epilepsy is the most common serious neurological disorder. It is a major global health problem with an estimated 50 million people affected worldwide.
At any one time, over 300,000 people in the UK have some form of active epilepsy. Every day about 32 people will be told that they have epilepsy. Yet in spite of its prevalence, it remains a hidden and sometimes feared condition. It remains in the shadows. As a consequence, people with epilepsy are all too often at a greater disadvantage than those with physical and sensory disabilities.
Children with epilepsy may be excluded from mainstream education because of their seizures. Thirty per cent of children with severe epilepsy may also have learning difficulties. People with epilepsy are likely to be needlessly unemployed or socially excluded. They often face discrimination in the workplace.
Last year, I went with representatives from the Joint Epilepsy. Council to meet Bert Massie, chair of the Disability Commission, to ensure that discriminatory practices against people with epilepsy were recognised and understood. We were positively reassured when he told us of a case he had defended in an industrial tribunal of a man who had seizures only in his sleep and who worked days but was sacked when the management found out that he had epilepsy. As he did not sleep during the day and on the job he won his case. This was a classic example of lack of understanding and latent prejudice.
Since 1953 there have been five government reports—1953, 1956, 1969, 1986 and 1999—which have all failed to be followed by any significant change in the services and support provided for people with epilepsy. Neither service planners nor policy makers seem to have been moved by the plight of people with epilepsy, irrespective of the fact that all these reports have drawn the same conclusions about the fragmented and poorly co-ordinated service provision. This only underlines the ignorance and apathy towards the needs of people with epilepsy. There must be better integrated care through better co-ordination and better cohesion between health, social services, education, employment and the voluntary sector.
959 All the evidence also shows that about 80 per cent of people with epilepsy suffer only minor problems and could lead normal lives. Their symptoms are controlled by medication and there is a broad range of modern effective treatments. But there is no doubt that there is still a treatment gap. Approximately 30 per cent of patients with active epilepsy are not receiving treatment from a specialist. One in 12 people are not referred to a specialist at all. On average, it takes six months to one year from the onset of a first seizure to definitive diagnosis and treatment. Research also shows that 20 to 25 per cent of cases are wrongly diagnosed.
That results not only in highly inappropriate and wasteful treatments being prescribed. It can also cause and exacerbate social and psychological implications for the wrongly diagnosed.
I shall say a few words about women and epilepsy. Epilepsy for a woman is not the same as epilepsy for a man. For a woman, it can affect sexual development, sexuality, the menstrual cycle, aspects of contraception, pregnancy, the mother-child relationship and the menopause. Recently, there has been a great deal of publicity about the variable standard of treatment of epilepsy in pregnancy. It is clearly crucial that all women wanting to become pregnant are referred for appropriate specialist advice.
This Monday morning, I had the privilege to chair the launch of the National Sentinel Clinical Audit of Epilepsy-Related Death. The audit was commissioned by the National Institute for Clinical Excellence as a result of lobbying by organisations representing clinicians, researchers and the voluntary sector, led by Epilepsy Bereaved. The audit addressed questions and issues that had in the past been felt to be too sensitive to ask. The audit has brought epilepsy out of the shadows. Media coverage of the launch has enlightened many people who had no previous knowledge. I say that because of the many people who have approached me this week to discuss the question and express their surprise and concern.
I want to place on record our sincere appreciation to the families, some of whom are listening to this debate, who bravely told us their own tragic stories, to Jane Hanna, who was the driving force behind the report, and to the team of professionals who have worked with her. The audit tells a tragic story of the scale of the problem, with about 1,000 deaths each year in the United Kingdom. Tragically, 52 per cent of all epilepsy deaths were of people under 50. Three people die every day—half of them young people. Some deaths are due to accidents, drowning or extended seizure. However many—around 500—are sudden, unexpected deaths, SUDEP, which do not have a clear course. Parallels have been drawn between the trauma of cot deaths and SUDEP. It is clear why. Most individuals who die from SUDEP die in their sleep. As with cot deaths, families experience bewilderment, isolation and distress because the death is sudden and unexpected.
The great tragedy is that the risks are known, and have been for a long time, but only 1 per cent of families are made aware that seizures can be fatal. So the fundamental question must be: were some of those deaths preventable; and if so, how?
960 The audit addresses both of those questions. The conclusions do not make easy reading. There are major deficiencies and failings at all levels of care. Of the 595 deaths investigated, there were inadequate levels of care in 77 per cent of child deaths and 54 per cent of adult deaths. The principal criticisms were poor access to hospital specialists, inadequate drug management by doctors and poor medical investigations.
Against the background of those criticisms, and given that better seizure control is likely to reduce the risk of epilepsy-related death, it was considered that 39 per cent of adult deaths and 59 per cent of children's deaths were probably avoidable. That says an awful lot about the society in which we live. Even in death, the victims were poorly served: 87 per cent were inadequately investigated; there were few post-mortems; and inaccurate statements were recorded as to the cause of death.
If I had more time, I could cite many more examples of such deficiencies. We can only hope that the audit is a loud wake-up call to all those responsible for the care of people with epilepsy. As I said, it has certainly brought epilepsy out of the shadows.
The report has been welcomed by the Chief Medical Officers around the UK. Sir Liam Donaldson, the Chief Medical Officer for England, has pledged to develop an action plan to reduce the level of preventable deaths within three months. I suggest that he takes note of the statement of good practice recently produced by the Joint Epilepsy Council, which calls for a review of local epilepsy services, early and better diagnosis, quick access to a specialist with knowledge of epilepsy, fast-track treatment procedures and, most importantly, better co-ordination between all professionals. Any action plan must also include giving better advice to people with epilepsy and their families.
In conclusion, I can do no better than to cite the report of the Chief Medical Officer for England. Referring to the five government reports, he said:
The reports have remained largely unimplemented, negative attitudes to epilepsy still persist in our society an the disease remains an unglamorous area of clinical practice. It is a time for a real breakthrough in our approach to epilepsy, one that is modern, enlightened, transforming the lives of the 380,000 or so people in England who have epilepsy".I await with interest the reply from my noble friend the Minister as to how those wise words are to be turned into reality.
§ 7.56 p.m.
§ Lord ChanMy Lords, epilepsy affects 300,000 to 400,000 people in the United Kingdom and is the commonest serious condition of the brain. I therefore congratulate the noble Baroness, Lady Gould of Potternewton, on initiating this debate today on a disease that causes needless deaths, especially in our children. Here I declare an interest as a Fellow of the Royal College of Paediatrics and Child Health.
The risk of premature death is two to three times higher in people with epilepsy than in the general population. Sudden, unexpected death in patients with 961 epilepsy, SUDEP, is common among young people, especially children. Half of the sudden deaths in epilepsy take place in the 20 to 45 year age group and most occur at home. Those tragic deaths in people at the peak of their productive lives is eminently preventable. In addition, most people with epilepsy—about seven in 10—have the potential to be free of seizures if they receive adequate medical care.
The urgent need for better care of people with epilepsy has been raised again by the publication of the report launched by the noble Baroness, Lady Gould: the National Clinical Audit of Epilepsy-related Death. That is the fifth major report following previous government reports during the past 40 years and it yet again recommends better care for people with epilepsy.
I now summarise some salient findings of that important study. The latest national audit focused on 2,412 deaths in the 12 months between September 1999 and August 2000 where epilepsy was mentioned on the death certificate. Of those, 1,000 were due to epilepsy. Inadequate levels of care occurred in 77 per cent of child deaths and 54 per cent of adult deaths. Only one in eight of the deaths examined by the national audit were judged to be adequately investigated by doctors who attended them. Families received little information about epilepsy from healthcare professionals even though they may have other children facing a similar risk. Many doctors underestimated the risks of epilepsy, reflecting the mistaken belief that epilepsy is a benign condition.
The audit concluded that an estimated six in 10 deaths in children and four in 10 adult deaths could have been avoided by appropriate investigations, adequate drug treatment and access to specialists in epilepsy. Other disturbing findings emerged from the national audit. In general, record keeping was very poor throughout the primary and secondary or hospital care of those patients.
The following recommendations arose from this study. First, there should be better training among doctors including GPs on the management of epilepsy according to published national criteria. Secondly, there should be access to good quality care for epilepsy, particularly for people with learning difficulties. Thirdly, we need better communication between clinical staff and between healthcare professionals and patients and their carers. According to the report, shortcomings in those areas may have contributed to avoidable deaths.
The Chief Medical Officer's annual report for 2001 stated that, within three months of the publication of the National Institute for Clinical Excellence's national audit of sudden death in epilepsy, an action plan should be in place to cut the level of preventable deaths from epilepsy. NICE will provide guidance to the NHS in England and Wales on the diagnosis and management of epilepsy in children and adults—that is expected in June 2004—and on the technological appraisal of epilepsy drugs for children and adults by December 2003.
962 We need greater public and professional awareness of epilepsy. That need is reflected in the small number of Peers present this evening for the debate. Greater awareness will help to break down the stigma associated with epilepsy and galvanise greater commitment to helping sufferers. I look forward to the Minister's response on this important, common but neglected medical condition that leads to unnecessary deaths, particularly among children.
§ 8.1 p.m.
§ Lord ReaMy Lords, as president of the British Epilepsy Association, the noble Baroness, Lady Gould of Potternewton, is a model leader of a proactive charity, not just a titular president. She last raised the subject of epilepsy in your Lordships' House in February 2000 and will, doubtless, continue to do so regularly until the care of epileptics improves and perhaps after that.
We are discussing the Special Educational Needs and Disability Tribunal audit of death and epilepsy, commissioned by NICE. It is worth pointing out that there have been four—or is it five?—major reports on epilepsy in the past 50 years. Despite that, the Clinical Standards Advisory Group reported, rather diplomatically, two years ago that,
the management of epilepsy in the United Kingdom is still less than optimal".Not much has changed in the past two years.One partial reason for the lack of action was that the condition was thought to have a low mortality rate, despite its socially and economically disabling nature. This report deals with death in epileptics and may, thus, grab the attention of the public, the Government and the health professionals more effectively than past reports. It should be said that epilepsy does not have a high mortality rate: it is 2.1 per thousand. However, death occurs at a younger age, robbing epileptics of decades of expected life. And, as has been said, the rate is two to three times higher than that among the general population of the same age.
The report describes a retrospective study. It is well presented and effectively reveals the deficiencies in the current care of epileptics. Overall, in 54 per cent of the adult deaths and 77 per cent of the children's deaths studied, the patient was felt to have had deficiencies in care. It is difficult to attribute the deaths to deficiencies in care with any certainty. There are no similar studies measuring in the same detail the number of epileptics now alive and well who also receive deficient care. The percentages may not be all that different.
What deficiencies were found? There is quite a list, and some of them were mentioned by the noble Lord, Lord Chan. Here are a few that relate to primary care; there are plenty more in secondary care. Too often, there was no structured review process. There was a low level of recording of clinical information; it was restricted to noting drugs and blood drug levels. There was no management plan, and few details of the type of seizure or of response to drugs or other treatment were recorded. There was a low level of re-referral for people with changing patterns of seizure or life events 963 or trigger factors. The provision of information—if any—about epilepsy or its potential risks to patients was not recorded. There were problems in professional communication between primary and secondary care and individuals in both settings.
It is not my place or that of the House to make detailed suggestions as to how the situation should be handled. The Chief Medical Officer has announced that, within the next three months, he will produce an action plan to reduce the number of preventable deaths. Work on that has already begun, and we should welcome that. However, because SUDEPs cannot be predicted, the only way to prevent them is to improve the investigation and care of all those with epilepsy, whether they have the idiopathic type—in which no physical changes can be found in the brain—or suffer from seizures caused by some other pathology—a tumour or a head injury. There is a long list of things that can cause fits.
Although first diagnosis is best made by a neurologist, preferably one with a special interest in epilepsy, ongoing care will, in most cases, be managed by a general practitioner or—increasingly, I hope—by a specialist nurse trained in the care of epilepsy. He or she could well rotate around several primary care teams, giving advice on setting up management plans and other ways of managing patients with epilepsy at those practices. Of course, there must be ready access to specialist units for those whose seizure pattern is changing or not responding to medication.
I want to ask my noble friend a few questions. I gave him some notice of that, although not much. How many consultant neurologists now work in the National Health Service? How many are paediatric neurologists? How well distributed are they around the country? The noble Lord, Lord Walton of Detchant, asked me to apologise on his behalf for not being able to make it this evening. He told me that Finland had the same number of neurologists as the United Kingdom but only one twelfth of the population.
Are there plans greatly to increase the number of nurses trained to provide care for epileptics? Have we any figures for such nurses? Long-term or chronic conditions such as epilepsy require surveillance and adherence to a protocol. They are much better managed by nurses than by doctors, who are usually more interested in diagnostic detective work and initial treatment than long-term care. It would be an excellent plan for every PCT to aim to provide a dedicated service for epileptics, which could be run in a primary healthcare setting or a secondary healthcare setting. The director of such a service could come from general practice, nursing or a neurological background. It does not matter as long as they are well trained, interested and dedicated to the work. I wonder whether my noble friend would agree that such a resource might be considered.
§ 8.10 p.m.
§ Baroness BarkerMy Lords, I want to thank the noble Baroness, Lady Gould of Potternewton, for giving the House this opportunity to discuss a much 964 neglected subject. I would really like to pay tribute to the work that she does as the chairperson of the all-parliamentary group. Under her astute chairmanship and with the concerted efforts of organisations such as Epilepsy Bereaved, The Joint Epilepsy Council, the British Epilepsy Association and the National Society for Epilepsy, things are beginning happen. I believe that is a great testament to her, and to them.
Noble Lords may have read in the press earlier this week the story of Prince John, the fifth and youngest son of King George V, who was born in 1905 and diagnosed with epilepsy at the age of four. When he was 11 his fits got worse and at a time when eugenics was gaining credence he was sent away to a cottage on the Sandringham estate, cut off from the rest of the family completely, and denied education. In 1919, at the age of 13, he died of what we would now call SUDEP. Almost nothing has been heard about him since. Well, it happens in the best of families.
This report, Epilepsy—Death in the Shadows, is an outstanding piece of work. It is a model of co-operation between the voluntary sector and the NHS. Shocking though its findings are in many ways, it is research of high calibre and, despite the classic criticisms of methodology from a medic, the noble Lord, Lord Rea, its calm, factual approach makes it all the more powerful. In the time available to me I want to focus on one subject on which the report sheds new light; namely, the issue of children with epilepsy. In light of the speech by the noble Lord, Lord Chan, I make this speech with a lot more trepidation than I would otherwise have done.
Although the number of children in the study was not large, the findings specifically about children are particularly important. The waiting time for referral to specialist care is not analysed by age, but it is reasonable to assume that a typical wait for a referral by a GP to a specialist takes between one and six months. What happens in those circumstances? What happens is people go private. People who would do anything for their children feel that they have no option other than to go private. I am not an advocate of private healthcare—in fact, I passionately believe that wealth should not be a barrier to health-care—but I understand why those people feel they have to do so. My concern is for those who do not have the means.
When referrals were made 35 per cent of people went to paediatric neurologists and only 3 per cent to specialists in learning difficulties. Given the increased incidence of learning difficulties among children with epilepsy, one has to question whether referrals to specialists were adequate. I say that because of all the children included in this study, whose secondary care notes were audited, none was known to be seizure free in the year before they died. Furthermore, the fact that a significant number of adults with learning difficulties got lost in the system during the transfer from paediatric to adult care demonstrates that the care pathways are wrong right at the heart of the NHS.
The transition through adolescence to adulthood is physically difficult for any child, and often traumatic for parents. Changes in hormonal patterns, muscle size 965 and density, changes in body weight, are all key factors in adolescent health. Children with epilepsy become normal teenagers. However, the interaction between physiological change and drug regimes is another factor which is not dealt with in this report but I believe ought to be the subject of further research.
The nature of hospital investigations is another area for concern. None of the children in the study had notes indicating that a brain scan or EEG had been carried out. Yet we know that access to EEGs and MRI equipment is becoming wider all the time. One can only wonder whether lack of scanning was in any way related to the fact that 22 per cent of the children were not receiving AEDs and that drug management for children was inadequate.
For families of children with epilepsy the lack of information about the risk that seizures could be fatal was unacceptably low. Use of specialist epilepsy nurses was rarely recorded and information about voluntary organisations and advocacy groups rarely issued to those people. Yet information about how to spot epilepsy, how to differentiate it from febrile convulsions and how to assist treatment with complementary lifestyles, such as ketogenic diets, are all important things which families need to know. Families are the key people who help people to live with epilepsy.
For the children themselves inadequate drug management, inadequate access to specialist care and inadequate investigations, cumulatively led to deaths. Tragically 77 per cent of those child deaths could have been avoided with timely diagnosis.
There is one other group of children who have not so far featured in our discussion. They are the children of adults who have epilepsy. Those children are often present when seizures take place and they may sometimes be the only people who are present when those seizures take place. It is my belief that when we talk about support to families and carers, children should be specifically included in support and training.
In the time that I have been aware of epilepsy I have been horrified—and I do mean horrified—to learn of the difficulties that children and families have to face. Lack of information, huge disparities in service standards and lack of community support are common experience. Yet those people who are affected by this condition have come to operate almost like a successful underground network. Word spreads about which consultants are good; people pass experience by word of mouth; people act as advocates for each other. However, guessing the right treatment should not be a matter of chance; it should be the norm. This report is an important step to making that happen.
Like other speakers, most notably the noble Lord, Lord Rea, I am very heartened by the reaction of the Chief Medical Officer to the National Sentinel Audit. In August I will be searching the newspapers and the websites for the first sight of the promised action plan. It is heartening that the CMO has given a firm commitment to respond to this report. Unlike the 966 noble Lord, Lord Rea, I have no compunction about making suggestions about what I believe should be in it.
I think it should include the following provisions: first, an undertaking that in each strategic health authority area there will be a neurological unit, properly resourced, to act as a centre of excellence for epilepsy to co-ordinate epilepsy services across each PCT within its area; secondly, a requirement for each of those units to implement and audit epilepsy diagnosis and management training for paediatric services in the tertiary sector and in the primary sector as part of the franchising process; thirdly, some of the resources announced in the budget for the NHS should, within an overall IT development strategy, include the setting up of an epilepsy management recording system in which the key factors highlighted in this report should be tracked; fourthly, a requirement for each PCT to include within its prospectus the establishment and maintenance of a medicine management programme to oversee regular reviews of AEDs for all people with epilepsy; fifthly, a programme of investment in information and advocacy services to be operated by the main voluntary organisations operating in this field: they are already extremely good but their services exist on a hand to mouth basis; sixthly, a programme of education for health and social care professionals working with children to be designed and implemented as soon as possible.
I started with the story of a little boy and I want to finish with the story of another. He is a friend of mine and he has just had his 10th birthday. I will never forget the look of fear and confusion on his face one night several years ago when his mum had been rushed to hospital having suffered several fits. Happily for my friend his mum survived. Her condition was controlled and she has been seizure free for a number of years. However, it was only through the persistence of her family and the extraordinary lengths to which they went to get information. A family that had never read the Lancet started reading it and by enabling themselves to have the information they persisted and challenged the doctor. That family was very lucky.
In 2002 with improved medication, sophisticated imaging technology this is, as this report shows, a real chance to decrease SUDEP dramatically. It may not take vast resources, just a willingness to change and development the interface between acute hospitals, primary care and users. This report shows how it can be done. I hope that the noble Lord, Lord Filkin, will support the noble Baroness, Lady Gould, and those charities, in what I believe is an extremely important piece of work.
§ 8.20 p.m.
§ Earl HoweMy Lords, I congratulate the noble Baroness, Lady Gould, on tabling the debate and on once again raising a subject in which I have a personal interest as president of the National Society for Epilepsy. The NSE at its headquarters in Chalfont St Peter is, I am proud to say, second to none in the world as a provider of assessment diagnosis and treatment 967 for people with more complex types of epilepsy. Largely by virtue of that, but also thanks to an active partnership with the National Hospital for Neurology and Neurosurgery in Queens Square, it is recognised as one of the foremost centres of excellence anywhere in the world for postgraduate neurological research and training. Alongside that, the society continues its longstanding role as a provider of long-term residential care and therapy for those whose epilepsy is particularly problematic.
I mention the work of the national society before anything else, not just because I take what I hope is an understandable pride in it, but also because it is an example of the voluntary sector as its absolute best in a field where voluntary sector organisations are very much to the fore. It is regrettable, to say the least, that many of the problems which the noble Baroness and I raised in your Lordships' House just over two years ago, when we previously debated the subject, remain as unresolved and as pressing today as they were then. However, as she indicated, things are moving. I take real heart from the fact that in an annual report covering issues of obvious gravity—for example, health inequalities, high blood pressure, liver cirrhosis and E.coli—the Chief Medical Officer should also have devoted a most thoughtful chapter to epilepsy. This is a long overdue, though decidedly welcome, recognition of a condition which, in comparison to many others, has been sidelined in the public consciousness.
How extraordinary that fact seems when we reflect that epilepsy is far and away the most common neurological condition of all, affecting as it does no fewer than one in 20 of us at some time in our lives. In England alone, 380,000 are afflicted with it. One cannot imagine until one has seen it or lived with it what a devastating effect epilepsy has on normal live and how fraught with dangers it can be if not properly treated. Of course, we all know the reasons for its Cinderella status. For centuries, those unfortunate enough to suffer from epilepsy have endured a social stigma and a lack of understanding which even in these supposedly enlightened times still persist in many quarters. Perhaps because of that, epilepsy has been an unfashionable area of clinical practice. As the noble Baroness said, we do not as a country have enough neurologists; not even half the optimum number. So how much more acutely we feel the lack of neurologists who have made epilepsy their speciality.
What is sobering in the CMO's findings is the confirmation of what some of us have long suspected: that too many people are being misdiagnosed and receiving inappropriate treatment; too many never see a specialist of any kind; and too many are having to wait an inordinate length of time before they are diagnosed and treated. In today's context, these are basic shortcomings. They should not be happening, yet they are. And it is these deficiencies in care that almost certainly lie behind one of the worst and least talked about aspects of the condition—least talked about, that is, until this week—sudden death. The National Sentinel Clinical Audit of Epilepsy Related Death was published on Monday, as the noble 968 Baroness said. The audit was commissioned with a specific aim: to establish whether deficiencies in the standard of clinical management of epilepsy or in the overall healthcare package could have contributed to deaths.
We have heard the statistics about those deaths. In the UK, 1,000 people a year die from epilepsy and about half to two-thirds of those are victims of SUDEP. There is a correlation between the risk of death and the frequency of seizures, which is why the control of seizures is critically important. The conclusions of the report were that 39 per cent of adult deaths and 59 per cent of deaths in children where epilepsy was a factor are probably or potentially avoidable. Hospital care was felt to have shortcomings for a large proportion of those patients whose care before death was audited. Access to out-patient advice, drug management and appropriate investigations were all found to be inadequate. Record keeping was found to be very poor and many deaths involving a post mortem were inadequately investigated. On one level, those findings should appal us. However, on another the fact that these weaknesses in clinical services have been highlighted by the audit is something we should be grateful for. Indeed, like the noble Baroness, I pay tribute to Epilepsy Bereaved and the Joint Epilepsy Council for spearheading such an authoritative piece of work, which I am encouraged to note has been welcomed in unequivocal terms by the Chief Medical Officer.
One feature of the audit stands out. Many of the shortcomings identified emanate from what one might term a lack of joined-up services for epilepsy patients: for example, a disconnect between primary and secondary care; a difficulty in accessing the right kind of specialist; a failure by hospitals to monitor out-patients properly; a failure by doctors to review patients and if necessary to re-refer, as the noble Lord, Lord Rea, pointed out; and a lack of communication between A&E and primary care. Perhaps the most dismaying disconnect is between doctor and patient—the failure by doctors to discuss with the patient the risks of epilepsy and how to minimise them; a failure to mention the side-effects of drug treatment or to point the patient in the direction of support from voluntary organisations.
It is easy to put that lack of communication down to the pressures under which GPs now operate, but I think it runs deeper than that. Many GPs have precious little understanding of the complexity of epilepsy as a clinical condition; nor do they often appreciate the huge burden of exclusion that epilepsy patients suffer socially, educationally and vocationally and the emotional turmoil to which that can lead. I am sorry to say that this part of the report spoke to me of a basic lack of willingness on the part of doctors to involve patients in decisions about their own care and a ducking out of confronting unpleasant truths.
Although I do not want to keep blowing the trumpet of the NSE, these are all issues on which that organisation has placed great emphasis, not least during this week—National Epilepsy Week—when it has undertaken a direct mailing campaign on the 969 theme of "living well with epilepsy". Information packs are being sent to hospitals, neurologists, specialist nurses, libraries and a whole range of places and individuals and the packs include a new leaflet called Epilepsy: risk which describes the risks that people with epilepsy face and how these can be minimised. It also emphasises how important it is to keep risk in perspective and to find a realistic balance between personal safety and personal freedom.
What should happen now? As other noble Lords have pointed out, no fewer than five government reports since 1953 have highlighted serious deficiencies in provision for epilepsy and little has change. One might think that there were no guidelines for best practice in the care of epilepsy, but nothing could be less true. There are all sorts of excellent guidelines; they just need to be implemented. But at long last, I really do think that we have something to look forward to. The action plan promised by the CMO arising from the SUDEP audit will be a welcome next step. I hope, by the way, that the CMO will agree to meet the voluntary sector organisations as he takes his work forward. There is to be guidance from NICE which I hope will be informed by the modernisation board. In due course, although further away, there will be a national service framework for long-term conditions including epilepsy.
All that is positive, but the momentum must not be lost. Epilepsy Bereaved described its report as a wake-up call and that is exactly as it should be. But it is a call to wake up and stay awake for not just the Government but for everyone involved in the care of this cruel and poorly served condition.
§ 8.29 p.m.
§ Lord FilkinMy Lords, I warmly thank my noble friend Lady Gould for initiating the debate. It could hardly be better timed, coming as it does in the middle of National Epilepsy Week. I acknowledge my noble friend's important position as chair of the All Party Parliamentary Group. The group has an important part to play in raising the profile of treatment for this condition.
The Chief Medical Officer's report in 2001, On the State of the Public Health, spoke clearly and trenchantly about the need to reinvigorate our commitment to improve epilepsy services. It did not duck the embarrassment of all governments over the past 20 years that we have not as yet cracked this matter in the way we feel we should have done. The report recognises that it has become a neglected area of clinical practice. As we acknowledge, more can and must be done to address the matter.
I shall not speak at length about the condition. It has been well spoken about in terms of the rate of epilepsy—significant numbers of people in Britain suffer from the condition; the fact that it is usually controllable, but the risk of premature death is significantly higher than it is in those without the condition; and the fact that women face particular difficulties and vulnerabilities.
970 The Government have, this week, welcomed the publication of the National Sentinel Audit of Epilepsy-Related Death report. The report was commissioned by the Government in response to representations from Epilepsy Bereaved. I should like to thank that organisation warmly for making the initial proposal and for project managing the audit. It is an excellent illustration of the significant contribution that a non-governmental organisation can make to the development of healthcare—it and others, as the noble Earl, Lord Howe, rightly pointed out.
The starkness of the information about sudden unexpected death is both shocking and potentially a powerful lever to action. To see that perhaps 59 per cent of child deaths and 39 per cent of adult deaths— no one will quibble about the exact figures, but these are high proportions—were potentially or probably avoidable is a very significant issue which no government can afford to ignore. It could mean that, nationally and annually, as many as 500 people die when their deaths might have been deferred. That is clearly a powerful clarion call to us.
Noble Lords have spoken clearly and accurately about what the audit indicated. In summary, it painted a picture of slow access to relevant specialists; a higher level of wrong diagnosis than one would want or expect; wrong medication and treatment regimes; and poor information and advice. All these added up to a picture of preventable deaths and needless suffering and anxiety for people who are exposed to the condition.
Perhaps I may talk briefly about the remedial action that is under way and touch on the importance of the next three months in terms of driving that forward. First, in terms of access to a specialist, there is progress. In the quarter ending in March this year, the average wait to see a neurologist was just over 12 weeks. Averages, of course, have extremes. We clearly wish to see that figure reduced substantially, but it is better than it was.
On improving the quality of treatment, what is significant is that we already know in large part how to diagnose and treat this illness. It is not one of the great unknown killers. The Joint Epilepsy Council's advice, to which reference has been made, is a compendium of best practice. The challenge is how to make sure that best practice is followed.
As the noble Lord, Lord Chan, remarked, work has already started on improving the quality of treatment. The National Institute for Clinical Excellence provides advice on best clinical practice to NHS clinicians, commissioners of NHS services and to patients and their carers. The sixth wave of NICE's work programme includes the development of a clinical guideline for the diagnosis, management and treatment of epilepsy.
There are also a number of new anti-epileptic drugs, and NICE is conducting a technology appraisal of the clinical and cost-effectiveness of the new drugs in children and adults. The clinical guidance is due in spring 2004; the appraisal is due in autumn 2003.
971 Turning to the point about a shortage of neurologists, the NHS Plan sets targets for 7,500 extra consultants, and we have invested in extra training places in neurology. The number of neurologists could be boosted by the Department of Health's global overseas recruitment campaign. I have said to officials in the department that we should make sure that neurologists are on our shopping list when we are looking abroad for relevant specialists to accelerate the speed at which we have adequate specialists.
The noble Lord, Lord Rea, asked a series of questions. The latest figures indicate that there are 326 consultant neurologists, with five additional specialist registrars recommended for the year that has just ended. An additional 80 specialist neurologists are under training now. That should produce an increase of about 24 per cent by 2005. As at September 2000, there were 30 consultants in paediatric neurology. Although we do not collect detailed statistics on epilepsy nurse specialists, we estimate that about 100 are currently operational. No doubt the issues that the Chief Medical Officer will be addressing will be, first, whether anything can be done to accelerate the arrival of suitable consultant specialists and, secondly, whether those numbers look as though they are likely to be adequate to achieve the kind of access speed that one should expect when one has had a potential diagnosis from a GP of a condition as serious as epilepsy.
Turning to epilepsy specialist nurses and other health professionals, I agree with the noble Lord, Lord Rea, about the potentially important role that nurse specialists can play in this and other areas. They provide an additional clinical resource. They have spearheaded the development of nurse-led and fast access clinics, monitoring seizure regimes and seizure control, support and information on aspects of medication and side effects and lifestyle precautions. The development of increasing numbers of nurse specialists in epilepsy, working appropriately with clinical teams, will play an important part in reducing diagnostic and treatment failures indicated in the audit report.
I shall not repeat the data on the number of additional nurses or the number of additional therapists and health professionals who are already en route in training as part of the NHS Plan. The House will be aware that good progress is being made on those. Again, these are no doubt matters on which the Chief Medical Officer will wish to take a view in terms of whether this looks adequate as a supply development for raising the standards to the level that we want to achieve on epilepsy.
The noble Baroness, Lady Barker, mentioned scanners. I agree with her: there is, without doubt, a need to have faster access to MRI and CT scanning for epilepsy patients. If I have done my arithmetic correctly, the New Opportunities Fund has already provided for 54 new MRI scanners; and 21 additional CT scanners are coming through Treasury funding. In addition to those figures, the NHS Plan and the NHS Cancer Plan should produce a further 100 CT or MRI scanners by 2004 which are suitable for epilepsy 972 scanning as well as for cancer scanning. Again, one would expect the action plan to check whether that number looked adequate to produce the kind of outcomes that we want in terms of access to suitable equipment.
On voluntary organisations, I again thank the Joint Epilepsy Council for the work that it has done on this matter, and I acknowledge the role of the noble Earl, Lord Howe, as president of the National Society for Epilepsy. He is quite right: this is a field in which so often in the past one has seen the voluntary sector playing a powerful role, almost punching way beyond the weight that would be expected of it compared to the national bodies on the other side—although perhaps I should move away from the boxing metaphors.
In terms of the way forward, I cannot speak for the CMO's diary, but I am certain that the department would welcome meetings with the voluntary organisations rapidly in order to receive their input into the review that is on-going. To take that one stage further, the noble Baroness, Lady Barker, gave a most interesting list of potential action plans. We shall study those.
We would also want to issue an invitation to other specialist voluntary organisations that have views not so much on where we want to go—I think we are agreed on that—or on recruiting more neurologists and finding more MR1 scanners, but on the difficult issue of how to shift the working practices of thousands of disparate professionals so that a condition which they may not frequently encounter is placed higher in their skill and understanding agenda. It is easy to issue circulars and advice but effectively shifting behaviour is the crucial issue.
There is a National Service Framework for Long Term Conditions. I think that NSFs are one of the most profound policy developments in terms of achieving clarity about clinical and medical outcomes and thinking seriously about how to achieve those outcomes. As noble Lords know, there is a commitment to that. In February 2001, Alan Milburn announced the development of the Framework for Long Term Conditions. As noble Lords will remind me, it will not be completed until 2005, which is why we have to have action as the CMO has indicated.
Like other noble Lords, I celebrate the role of the CMO in making a strong and clear commitment. From his almost unique position, he has said, "This will not do. We have to move forward. We must stop producing reports and turn it into effective action".
As time is pressing, I shall have to take the points very rapidly. The report raises probably five key issues, the first of which is access to specialists. I have talked about that and about what some of the checks would be. The next is advice to patients and health professionals on the treatment for epilepsy. Clearly NICE will have important work to do on developing effective advice on medication and seizure-control regimes and ensuring that it is taken up. As for access to investigations, we have spoken about EEG, MRI and CT scanners. I think that no more needs to be said at this stage on that.
973 How best to manage shared care between GPs and hospital specialists is the really difficult issue which we must all focus on if we are going to shift practice. Perhaps we need to ensure the development of clinical networks and clinical leaders who exhibit some of the excellence of best practice that others can learn from. I am sure that nurse specialists will play a significant role in such initiatives.
The last point is information to patients and their families. The noble Earl, Lord Howe, powerfully made the point that patients and their parents must be treated as responsible, intelligent adults who have a right to be informed of the risks of, for example, sudden death. The failure to provide such information is clearly a fundamental gap in any form of healthcare. We have to think how we can significantly improve the information and advice provided to patients and their families not only about the clinical condition or medical risks, but about how to live effective lives while carrying the condition.
The NHS Modernisation Agency will have an important role to play in considering whether there are any lessons for the design and promotion of good practice. However, the dissemination of good practice to front-line clinicians and nurses is the most crucial issue. Although no government of the past 20 or 30 years can hold up their head with pride on this issue, we have all been given an effective wake-up call by the audit, the CMO's commitment to move forward on it and the voluntary organisations' commitment—if I heard the noble Earl, Lord Howe, correctly—to continue to work in partnership in moving from rhetoric to results. I very much welcome that commitment and hope that we will be able to turn it into effective dialogues and then into effective action.
Our commitment is underpinned by the extra funding provided in the Budget. Many of the steps we are taking would not be possible without that significant increase of 7½ per cent above inflation over the next five years. I would certainly never like to have to come to the House and cite insufficient funding as a reason for not delivering appropriate remedies. I welcome this debate and I very much look forward to "progress debates" and being brought to account by the House in positive ways.