Epilepsy is a serious neurological condition that affects nearly 400,000 people in England alone. It is a complex condition and can affect anyone, at any age, in any walk of life. It can have a significant impact on a person's quality of life, as well as the lives of those caring for them. It is estimated that 5 million people in England are affected by the social implications of epilepsy. Only about 50 per cent. of people with epilepsy are seizure-free.
There are numerous guidelines on the treatment of people with epilepsy, the most important of which are the national service framework on long-term neurological conditions, which was published in March 2005, and the NICE clinical guidelines on epilepsy, which were published in October 2004. Those documents both contain clear guidelines on the diagnosis, investigation, classification and treatment of epilepsy and on access to services and how people with epilepsy should be able to live from day to day. The Government also published an action plan for epilepsy in February 2003, which committed them to an increase in spending on epilepsy services.
The key concern for epilepsy patients, however, is whether any of the guidelines and action plans have led to actual improvements in services. The all-party group on epilepsy sought to determine that through an inquiry into services, and in June 2007, it published a report on the human and economic costs of epilepsy in England, entitled "Wasted money, wasted lives". The report found that the NHS was failing people with epilepsy and that a much improved service was desperately needed. It concluded that a catalogue of failures in the care and treatment of people with epilepsy had resulted in about 400 avoidable deaths a year and £189 million in wasted funds.
As the NICE guidelines for epilepsy came up for review in the autumn of 2008, Epilepsy Action, supported by UCB Pharma, undertook a further review of service provision, with a view to understanding whether the care guidelines had led to any improvements in the provision or delivery of services. Epilepsy Action, supported by the health informatics team at Sue Ryder Care, then carried out a further survey of all primary care and acute trusts in England, to gain an insight into the pattern of service provision for epilepsy patients. Alongside that study, Epilepsy Action conducted its own survey of people living with epilepsy, to try to understand their personal experiences of the NHS in the past couple of years.
The findings of all the surveys were brought together in the new report, "Epilepsy in England: time for change", which was launched at an event in Parliament on
There are huge discrepancies in the ways in which PCTs and acute trusts currently gather and collate information on epilepsy. It was found that many trusts do not even hold basic data on the prevalence of people with epilepsy in their region. Only 18 per cent. of PCTs were able to report the number of children with epilepsy, which makes planning for transition services from paediatric to adult care almost impossible. Patient access to specialist clinicians is being compromised by the fact that only 51 per cent. of acute trusts have at least one consultant neurologist with a special interest in epilepsy, and only 76 per cent. have a consultant neurologist at all.
I congratulate my hon. Friend on securing the debate on such an important topic. She may well be about to come on to this point, but does she agree that one of the most disturbing findings of the research was that the lack of specialist care that she so eloquently describes led to a 20 to 30 per cent. wrong diagnosis of epilepsy? Not only are resources removed from services that should go to people who have epilepsy, but that is poor value for money for the taxpayer.
I thank my hon. Friend for that knowledgeable insight. The previous report showed that 69,000 people live with unnecessary seizures and 74,000 take anti-epileptic drugs that they do not need. The regularity of avoidable deaths, of which there are about 400 a year, is shocking, and the money wasted in delivering inadequate and in some cases acutely wrong services is as appalling as the unnecessary deaths.
Unfortunately, the majority of epilepsy patients wait more than two weeks for an appointment with a specialist after their first seizure. In some cases, they wait between 17 and 24 weeks, which I suspect makes a correct diagnosis even more difficult. A very low number of PCTs and acute trusts have the right equipment to carry out essential diagnostic tests, and that causes delays in diagnosis and treatment. Taken together, the surveys, sadly, paint a picture of poor service provision. Epilepsy appears to be a forgotten condition, and patients are falling through the cracks in the system. Government and NICE guidelines, which set a minimum standard of care, are simply not being adhered to.
Epilepsy organisations have pointed out that primary care trusts often seem powerless or unwilling to implement improvements. Reasons given for non-inclusion in local delivery plans were that national targets took priority and left insufficient funding to enable health trusts to implement the NICE guidelines. Doing so will require serious investment of as much as £150 million per year, but in real terms that is only £340 per person with epilepsy.
To address the shortfalls in service provision for people with epilepsy in England, the new report calls on the Government and policy makers to take a lead in driving improvements in epilepsy service provision. That includes implementing the following 10-point plan. To ensure that people with epilepsy have access to the services that they deserve, we should appoint a national clinical director for epilepsy, to review service provision in England, and lead change. We should define, in the NHS constitution, a patient's right to care to the standards outlined in NICE clinical guidelines.
We need to ensure that local commissioners carry out a formal review of the local implementation of the NICE epilepsy guidelines, and develop plans to ensure that they are met. We must ensure that NHS work force planning focuses on the recruitment and training of sufficient epilepsy specialist consultants and nurses in order to allow trusts to deliver the NICE guidelines; and we must ensure that PCTs build a clearer picture of the epilepsy population in their areas, especially among the under-18s, and factor that into their review.
We should commit ourselves to ensuring that all patients with suspected epilepsy see an epilepsy specialist consultant within two weeks; and ensure that all acute trusts have adequate diagnostic equipment, in line with the patient population that they serve. We must also ensure that all patients receive an annual review of their epilepsy; and ensure that transition services are in place for children moving to adult epilepsy services, and that they are effective. Lastly, we must ensure that all patients with epilepsy who want a comprehensive care plan have one.
I know that the Minister is interested in the matter and that she has responded positively in the past. I therefore I ask her to ensure that the Government urgently put in place a programme to increase the number of neurologists and other relevant clinicians to levels recommended by the Royal College of General Practitioners. The Government should also ensure that the Healthcare Commission carries out an improvement review into the state of epilepsy services, formally assesses the provision of epilepsy services in individual healthcare organisations and develops an action plan to improve services that are shown to be failing people with epilepsy.
I apologise, Mr. Taylor, for my late arrival. It was the result of an unexpected incident in Parliament square.
I congratulate my hon. Friend Chris McCafferty on her success in the Speaker's ballot and on choosing epilepsy services as her subject. I know that my hon. Friend has a strong and long-standing interest in the matter. She has raised a number of important points. My hon. Friend Mr. Truswell made some strong points in his intervention; I know of his personal and constituency interest in the subject through his membership of the all-party group on epilepsy.
As my hon. Friend the Member for Calder Valley indicated, a number of reports in recent years have covered epilepsy services, most recently the Epilepsy Action study of epilepsy service provision in England, which was published last month. They all highlighted the fact that services continue to fall far short of the standards that people with epilepsy have a right to expect—and I agree that services are still not good enough.
Epilepsy Action's report cites the failure of primary care trusts to implement National Institute for Health and Clinical Excellence guidance. I welcome that hard- hitting report, which in many ways is exactly what we and the NHS need to hear. Those messages are for all who commission and provide services, and I will be writing to strategic health authorities to draw their attention to the report's recommendations.
It is important, however, to emphasise that clinical guidelines are not mandatory in the same way as NICE technology appraisal guidance. The purpose of clinical guidelines is to support clinical decision making, and they can also assist PCTs in service development and redesign. Health professionals must be free to use their clinical judgment and, in consultation with the patient, to decide on the most appropriate treatment options, taking account of individual clinical factors. Clinical guidelines include making an assessment of both clinical effectiveness and cost-effectiveness, so it is clearly in the interests of PCTs to implement the recommendations when appropriate.
NICE's implementation directorate has taken considerable steps to improve the support that it makes available to the NHS in order to raise awareness and implement the guidance. It has published a commissioning tool to support the development of effective services for the accurate diagnosis of epilepsy in adults. The tool helps PCTs to estimate and inform the level of services needed locally, as well as the cost of making local commissioning decisions. NICE also employs implementation consultants, who work with a range of NHS staff, including clinicians in local NHS organisations, to spread best practice and to share concerns on the implementation of NICE guidance. The Government recognise their role in supporting the NHS to plan and prioritise.
The need to plan for NICE guidance is included in the prioritising investment competency for world-class commissioning. Those competences describe the knowledge, skills, behaviours and characteristics that will need to be developed by PCTs in order that they can reach world-class commissioning status. The competences are underpinned by an assurance system, which holds commissioners to account and which will drive performance and development. The assurance system will be nationally consistent and managed locally by strategic health authorities.
However, I believe that we can do much more from the centre. The Government have a strong role to play in encouraging and supporting the NHS to improve the care that it provides. Through a series of workshops, we are working with NHS commissioners and the third sector to improve commissioning for neurological services. I have asked epilepsy stakeholder groups to be invited to those workshops; the importance of implementing the NICE guidance and the particular issues for epilepsy services should be fully integrated into the sessions.
I have emphasised the importance of effective commissioning in delivering high-quality, accessible services. However, an often-voiced concern is that without robust data PCTs cannot effectively plan and commission services. The development of a national dataset is a key part of the programme of work needed to support the implementation of the national service framework for long-term conditions. My hon. Friend will be aware that the NSF published in 2005 focuses on improving services across England for a range of neurological conditions, including epilepsy.
When implemented, the dataset will be used at a national level to monitor the achievement of NSF standards and quality requirements. The dataset will also support secondary use functions. At a local level, it will be used by clinicians and managers for commissioning, clinical audit and research and performance management, and it will help to drive up standards and the quality of care.
Quality, of course, is key to my ministerial colleague, Lord Darzi, and his next stage review of the NHS. Indeed, quality is key to all ministerial portfolios and to all hon. Members. The next stage review, a once-in-a-generation review of the NHS, involved more than 2,000 local clinicians working with many more thousands of patients, members of the public and others to develop regional visions for improving health and healthcare services for all. The national report "High Quality Care for All" responds to the challenges of delivering the visions developed locally. It sets out wide-ranging proposals that place quality of care at the heart of everything that the NHS does, particularly in empowering patients and staff to secure the effective and personalised care that we expect for ourselves and our families.
A key component in the drive to improving the quality of care across the NHS will be the establishment of a national standards board to advise Ministers on the priorities that NICE should adopt when setting standards for the NHS. The board will also advise on whether there are any conditions that require closer attention from the Department. Clearly, that could be an important lever to support improvements to epilepsy services. I encourage all concerned to get involved. I have asked Department officials to explore the mechanisms for referring the matter to the board.
The next stage review also reinforced our commitment that everyone with a long-term condition who wants a personalised care plan will be offered one. Care planning is, of course, key to delivering the services and support needed by people with long-term conditions, such as epilepsy, to self-manage their condition in partnership with their care teams. We are developing a range of tools and resources to support the NHS and its partners in delivering this commitment. That includes a suite of guidance documents, starting with a guide for commissioners, which we published last month. The aim of this guide is to provide commissioners with the information and support that they need to embed care planning in their localities. It should help them to achieve truly personalised services, promoting health and well-being and ensuring proactive, planned, co-ordinated and integrated services.
Effective and personalised care planning also requires patients to feel more involved in their care and empowered to participate in decision making.
Quite rightly, this debate concentrates on the urgent challenge of addressing the clinical needs of people living with epilepsy, but does the Minister agree that we need much more joined-up thinking across Government about the provision of services to people with epilepsy? For example, we need more training of people whose professional lives bring them into contact with people living with epilepsy. We need to monitor the incidence of sudden unexpected deaths from epilepsy and how we support bereaved families. We need to ensure that the education system supports young people living with epilepsy. How can we achieve that joined-up thinking?
My hon. Friend is right that we must work together more closely, and I think that the new children's health strategy, launched in the past few weeks, will help us to do that. The Secretaries of State for Health and for Children, Schools and Families meet regularly, and the issues concerning young people, especially in the education system, are being worked on at all times.
It is not easy to admit to having epilepsy. Sadly, a stigma is still attached to the condition, for the person and their family. We should therefore do everything and anything possible to bring the condition out into the open, so that it can be discussed in a professional way and so that people can feel safe and competent working, studying and being with people with epilepsy, whether in a family, social or any other setting. That is long overdue. I commend Epilepsy Action for its work in bringing the condition to the forefront. In particular, however, I commend the all-party group on epilepsy and its sterling work on this subject. It is easy to talk about empowerment and the creation of workshops, but at the end of the day most families living with epilepsy do not necessarily feel empowered, so that work must begin at a grass-roots level. We can do that best if we try to rid ourselves of the horrendous stigma still attached to this serious and unexpected neurological condition.
Patients need good information to make the most of this process. NHS Choices is one of a number of initiatives that we have developed to provide comprehensive, clinically-accredited information about health and health services. As part of the ongoing development of the NHS Choices website, we will shortly be publishing an NHS guide to epilepsy. Different age groups and people with different abilities will be able to access this powerful tool of empowerment. The guide will provide comprehensive information about symptoms and diagnosis, as well as treatment options and information about living with epilepsy. It will also include data indicators providing information about how local services perform, which is exceptionally important for families and patients. Although the proposed performance indicators are still subject to agreement, it is hoped that these, where possible, will reflect aspects of care congruent with NICE guidance.
Through the NSF and NICE guidance, we have set out our very clear expectations on services for people with epilepsy. Through world-class commissioning, the dataset and our work with commissioners, we have provided the levers to commission services that meet these expectations. We also continue, as part of the Healthcare Commission inspection regime, to require people to work in accordance with both NICE guidance and the NSF. The NHS next stage review has reaffirmed our vision of services shaped around people and that continuously improve quality. We have identified ways in which we can realise these aims for all patient groups.
I welcome this debate and share my hon. Friend's desire for people living with epilepsy to receive the services they need and deserve. I shall not accept excuses from local commissioners and primary care trusts that the problem is with other targets or the provision of resources. That argument is exceptionally easy to make when really people need to say, "We need more help with commissioning. We do not know where to start." That is understandable in a very complex PCT setting, where individual needs are being met locally. However, I find it difficult to accept excuses for why things are not happening when we are putting in place a framework to provide assistance. I can assure my hon. Friends that we will continue to provide support and encouragement to the health service to ensure that those living with epilepsy receive the services that they need, and I shall do all that I can on this very serious subject.