Epilepsy

Norman Lamb Excerpts

Tuesday 29th January 2013 Commons Chamber

[The Minister of State, Department of Health (Norman Lamb)]

I think I must have broken the record for the time it takes to get from Committee Room 11 to the Chamber. It took under a minute, even though I bumped into our Chief Whip on a staircase and came off worse.

I congratulate the hon. Member for Vauxhall (Kate Hoey) on securing this important debate and on setting out the issues so clearly. I also thank hon. Members for their valuable interventions, which have been helpful. Occasions such as this are valuable because they expose to public attention issues that do not get debated enough in this place. They also force Ministers to think about particular conditions and their consequences. If I do not have ready answers to all of the issues that the hon. Lady has raised, I would be very happy to write to her to ensure that everything gets a proper and full response.

By way of introduction, I join the hon. Lady in paying tribute to Epilepsy Action for its work and the excellent report it has produced. It is great that we have this opportunity to highlight the issues that it has raised. She referred to the low level of engagement at the local level. She pointed out that there is good practice in many areas, but that there are also too many places where not enough is being done. In a sense, the thing that causes frustration is also the prize: the fact that we know that if we do things better we can improve the lives of people so much. That is a great prize to be secured. Along with Epilepsy Action, the Joint Epilepsy Council, which is the overarching group, also does very important work.

I should also mention that I met representatives of Epilepsy Bereaved before Christmas to discuss sudden, unexpected death resulting from epilepsy, and I found it an incredibly useful session. I learned a lot about the extent to which, through better care, we could significantly reduce the number of people who die in such circumstances. It is, therefore, incumbent on the whole NHS to ensure that we raise the level of care to the standard of the best. If we can do that, we will make a real difference.

I was concerned to hear the hon. Lady say that mortality in epilepsy is rising. Given that we know that if we do the right things we can significantly reduce mortality, that is a real concern. Epilepsy Bereaved made the case for a national register of deaths, which I strongly supported when I met its representatives. It would be a good innovation, because we need to understand much more why things are happening and where failures have occurred.

Epilepsy is the most common serious neurological condition and it affects almost 500,000 people in the United Kingdom alone. Each year a typical GP will treat 10 people with epilepsy, diagnose one or two new cases and care for 20 people who have had seizures in the past but who are currently not in treatment.

The hon. Lady mentioned Jemma, who had spoken at the launch of the report about her experience of good primary care and about the difference that it makes to have a doctor who shows an interest and understands. When one hears stories directly from such individuals, it is so much more powerful.

I should also mention the hon. Lady’s constituent, Ashleah Skinner, who sounds like a true expert patient. The more that we can spread such understanding and allow people to self-care more effectively, the better.

[Bob Stewart]

If we know pretty accurately the number of people who are suffering from epilepsy in our country, would it be crass or wrong for the Government to write to each of those individuals to ensure that they know exactly what they can do to improve their circumstances and for what benefits they might be eligible? Perhaps that is happening already. If it is, forgive my intervention.

[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. Whether it is provided by the Government or at a local level by primary care general practices, he is right to highlight the importance of much better guidance on how people can self-care. The role of expert patients can also be powerful. It can be of great value to somebody who is diagnosed with epilepsy to get guidance and support from somebody who already has the condition.

I am aware of the historical problems in this area and acknowledge that the services have not always been good enough for those living with epilepsy. Indeed, I acknowledge that the services are still not good enough in some parts of the country. There was some uncertainty, and perhaps some scepticism, over whether the coalition Government’s reforms would deliver the improvements that were so desperately sought. That was understandable, given that epilepsy has rarely found itself in the same starting position as other long-term conditions.

I am pleased to report that the Department of Health has taken a number of steps recently to improve the diagnosis and treatment of epilepsy. It will work with the NHS Commissioning Board, which takes on its full responsibilities from April, to drive further improvements for those living with the condition.

[Laura Sandys]

As the Minister rightly recognises, epilepsy has been a Cinderella condition. It has been ignored and has not received the profile that the numbers warrant. He is saying that there will be a step change in how the Department looks at the condition. Will he ensure that there is an understanding of what outputs we expect and that there are barometers to measure them, particularly given that the report states that only a third of commissioners currently put in place programmes for people with epilepsy?

[Norman Lamb]

I am very grateful to my hon. Friend. Clearly, the role of the Commissioning Board will be central in holding clinical commissioning groups to account. The register that Epilepsy Bereaved is calling for could, combined with action from the Commissioning Board, be powerful in helping us to understand more about the condition and in driving better practice.

I understand that there are no specific tests for epilepsy and that it can be difficult to diagnose. The hon. Member for Vauxhall talked about the problem of mis-diagnosis. Some people are diagnosed as having epilepsy who do not have it, and some people who have epilepsy are diagnosed as having a different condition. Such mistakes result in poor or substandard care. Increasing the awareness of the condition among health care professionals is a key factor in improving its early diagnosis and treatment. Detailed advice on epilepsy has therefore been made available on the NHS Evidence website. That is supported by the updated clinical guideline on the diagnosis and management of the condition that was published last year by the National Institute for Health and Clinical Excellence.

The treatment of long-term conditions is one of the NHS areas prioritised by the Secretary of State for Health, and it has featured prominently in the mandate to the NHS Commissioning Board and the NHS outcomes frameworks. The hon. Member for Vauxhall mentioned the awful jargon with which we all have to deal. I have my own personal war against jargon in the Department of Health, confronted with it as I am on a daily basis. As a quick aside—given that we have a bit more time than usual—we need to use language that people understand, rather than jargon that too often excludes people.

The mandate and outcomes framework set out the Government’s objectives for the NHS, and highlight the areas where we expect to see the biggest improvements. The mandate sets an objective for everyone with a long-term condition to be offered a personalised care plan by 2015 that reflects their preferences and agreed decisions. There is a legal requirement for the Commissioning Board to seek to meet the terms of the mandate, and it is potentially powerful to say that everyone with a long-term condition should have a personal care plan that they have been involved in designing and drawing up. Too often, whether for epilepsy or mental health—another area I have great interest in—people simply do not have such a plan and have never been asked for their views on their care and treatment. If we can effect the transition so that everyone with a long-term condition benefits from it, we can make a real difference. Epilepsy Action and other voluntary sector organisations have been requesting such a plan for some time now, and it should be seen as a positive step.

The NHS Commissioning Board has responded to the mandate and the outcomes framework by incorporating long-term conditions into the structure of the organisation with

“enhancing the quality of life for people with long-term conditions”

as one of its five areas of focus. Strong national leadership for epilepsy services has been raised time and again in the House, and I am pleased to announce that, as part of this work, the NHS Commissioning Board is appointing a national clinical director for chronic disability. They will not deal specifically with epilepsy, but having such a director for chronic disability, including epilepsy, is a positive step.

The NHS Commissioning Board is setting up four strategic clinical networks, which is important. We have seen the benefit of such networks with cancer, and those benefits are now being spread to other areas, including neurological disorders. The networks bring together groups of health professionals to improve services for neurological disorders and other specific conditions. They will receive an investment of £42 million and play an important part in driving up quality and consistency in treating those conditions. If everyone within the service is linked into expert networks, the chances of improving treatment on the ground become greater. Health and well-being boards will play an important role in driving up standards locally, given their role in agreeing local priorities and influencing commissioning decisions.

This year will see the publication by NICE of new quality standards for children and adults with epilepsy—that has been called for repeatedly in this House. Those quality standards, which are expected to be published in February and March, will help clinicians make informed decisions about referrals, tests and ongoing care, and ensure a more consistent application of NICE guidelines in that area.

The Department also understands the importance of providing the best possible information to people with epilepsy and promoting better self-care—the point correctly raised by my hon. Friend the Member for Beckenham (Bob Stewart). GPs have an important role to play in that, and in ensuring that those living with epilepsy have their condition kept under control with correct medication. Ultimately, however, responsibility for self-care lies not with health professionals, but with patients. Through NHS Choices, the expert patients programme, and support from health professionals and voluntary sector groups, people with epilepsy can receive the information they need to stay safe and independent, and to manage their condition on a day-to-day basis.

On the wider Government response, the hon. Member for Vauxhall referred to the role of education and schools. I understand that the Department for Education is working to support children and young people with epilepsy, as some are not reaching their full potential in school and further education. For example, the Department has issued guidance to schools on how best to manage medicines for pupils diagnosed with epilepsy and other conditions. For those pupils who cannot attend school because of their condition, the Department has provided guidance on what alternative provision should be made.

In addition, the forthcoming children and families Bill will introduce a duty on local authorities and clinical commissioning groups to commission services jointly—a much more integrated approach than we had in the past—to meet the needs of young people with special educational needs and disability, including those with epilepsy. The Bill will introduce a streamlined, single assessment for the young person. It will also inform an education, health and care plan for the individual. The plan will enable families and young people to buy services through direct payments—we are putting the individuals in charge and giving them real power—thus extending their choice and control. That approach is currently being piloted across 20 pathfinder sites. I understand that the lessons learned will inform the development of secondary legislation and codes of practice, and help with implementation.

For many adults with epilepsy, employment is a major quality-of-life issue—the hon. Lady rightly raised the importance of employment. Studies have shown that people with epilepsy are up to twice as likely as people without the condition to be at risk of unemployment or under-employment relative to their skills and experience. The Department for Work and Pensions has confirmed that, although it does not target employment programmes exclusively at individuals with particular conditions, its programmes, including specialist disability employment programmes, aim to identify and meet the needs of the individual, including those with epilepsy.

The Department for Work and Pensions also recognises the important role that cash benefits can play in supporting people with a disability or long-term condition to remain independent. Entitlement to disability living allowance, and to its planned replacement, the personal independence payment, is not based on a specific health condition. However, my understanding is that people with epilepsy may be eligible for support, depending on the severity of their condition. The hon. Lady mentioned the Atos-conducted work capability assessments and made the legitimate point that they should concentrate on the individual. We can have guidelines to help to steer assessors, but the individual’s needs should be properly and fully assessed. That is outside my departmental responsibilities, so I will refer her remarks to the right place.

The Department for Work and Pensions has advised that, throughout the development of the new personal independence payments policy, it has engaged and consulted with a wide range of disability organisations. That includes a discussion with Epilepsy Action on the assessment criteria for the new policy. For those who face barriers to work because of their condition, financial support may also be available under the employment and support allowance—that, too, is subject to eligibility.

I should refer to some of the hon. Lady’s specific questions—I will ensure I give her a full reply later. She mentioned bus passes. I understand that some local authorities in England have implemented their own bus pass concessions and extended the hours of free travel to include peak times, but the majority have not. Ultimately this has to be a matter for local decision making. I recognise that such variations are not ideal, but the local authority has the power to do this, and pressure can be put on the local authority in any particular area to do what others have already done.

I was slightly confused because the hon. Lady referred to both the National Audit Office and the Audit Commission. The point is that we should focus on the important issue. She argued the case for some sort of inquiry into epilepsy care to see where we can improve its quality. The right approach is probably through the work that NICE is doing. If we can establish what good care looks like, we can encourage all clinical commissioning groups to seek to deliver that quality of care.

The hon. Lady also talked about outcome indicators, and I will look at that and come back to her. We need to try to understand the jargon, but the important point is that we should, as far as possible, be seeking to focus on the results for individuals. Too often in the past we have focused on processes and not enough on what we seek to achieve through health care. If we can, through the outcomes framework, identify things that we are seeking to achieve for patients—improving their quality of life—and that can then drive the system, that would be a good thing. We will look specifically at that.

The hon. Lady talked about the constitution and the right of involvement. We have been updating the constitution and putting patients’ rights much more centre stage—focusing on the personal rather than a more paternalistic approach. That is the right approach, and through the combination of what the constitution will say with what the mandate will require of the NHS in providing the personalised care plan—with the involvement of the individual and based on their priorities, not just presented to them—we can make real progress in putting the patient centre stage.

The hon. Lady talked about the lack of engagement of CCGs. That point has been heard, and it is good that she has had this opportunity to make the point. The Commissioning Board will do what it can to ensure that the quality of care is improved at local level, and it will be the board’s responsibility to engage with CCGs on that.

The hon. Lady also mentioned children and the fact that they are not achieving their full potential. I think that I have addressed that point already, but I will come back to her if I have missed anything. She and others referred to the absolute importance of a speedy referral from GP to specialist, and the hon. Member for Walsall South (Valerie Vaz) also mentioned the action plan for children in schools. She is right to raise both those issues, which were addressed in her ten-minute rule Bill.

I hope that I have addressed the key issues that were raised in the debate and I apologise if I have missed any. I thank the hon. Member for Vauxhall for introducing this debate, which has given me an important opportunity to highlight some key concerns, as well as the fact that much work remains to be done to improve the quality of care across the country. The Government are working to support people with epilepsy and to keep those living with the condition as safe and independent as possible.

Question put and agreed to.